CIDP – Rituxan treatment?

Hi, Allaug.

DocDavid used Rituxan and it worked wonders for him (he said: ‘It arrested my CIDP and the Americans are using it a lot. I wrote it up in “Practical Neurology” August 2005’), and there’s a comment on one of the threads on the UK forums that says that Eric Vance had good success with it as well.

DocDavid also had a write-up on it in [I]Reaching Out[/I] No. 55, Winter 2004. I’ll need to sort out copyright, but if possible I’ll scan the text and post it on the UK forum.

Deb

[QUOTE=eightplusfive]DocDavid also had a write-up on it in [I]Reaching Out[/I] No. 55, Winter 2004. I’ll need to sort out copyright, but if possible I’ll scan the text and post it on the UK forum.
Deb[/QUOTE]
I do have that text as a pdf file including a picture of DocDavid walking his daughter down the aisle. I could e-mail it to you,. Last year someone on the German GBS forum asked me to translate it into German. It was published in their quarterly magazine. No idea how they dealt with copyright.

It took me a few months to realize that the person in the article was the same as our DocDvid. I told him about it then on the UK forum.

Allaug, I asked Eric a few months ago how he managed to receive Rituxan and how he paid for it. He sent me an e-mail in April telling me that his neurologist fought with his insurance company, BlueCross Blueshield, for over a year. They denied it because it was not approved by the FDA for CIDP. His oncologist then mentioned a program called SPOC (Single Point of Contact Reimbursement) with the drug company. He contacted the company and was approved for a one time initial treatment since he met all the criteria.

I wrote to the drug company over a month ago asking about this program. I have not heard from them yet.

Hi, Allaug.

I wasn’t sure you had seen DocDavid’s thing in [I]Reaching Out[/I] since it was a couple of years ago, and I couldn’t recall if David had put the same info on the forums or not–my mind’s not as good as it used to be (I keep blaming that on the CIDP, since it couldn’t have anything to do with my getting older:D).

At any rate, I checked Eric’s Web site ([url]www.ericvance.net)[/url], and couldn’t find anything specific about Rituxan.

And now, back to those with answers!

Deb

sorry to have been out of touch for so long.

Yes, I am continuing to have improvements with the Rituxan. next infusion this friday, 2 June 2006, i think it’ll be the eighth.
Details of the financial aspects are as stated above. fought insurance for around a year. finally approved by SPOC, mysteriously approved by insurance 1 week later. never have been sure why/how that happened.
rituxan schedule was 1 infusion each week for 4 weeks from mid august 2005 through mid september 2005.
stopped all IVIG treatments (was on twice/week schedule) when we began the rituxan.
began really getting worse within 2 weeks so we went back to once weekly IVIG at the beginning of september 2005.
saw neuro 2 weeks after the last rituxan infusion and i was still losing ground.
went to 3 times/2 weeks IVIG schedule.
just before holidays i realized i was getting much stronger although i was on a less frequent IVIG schedule than before rituxan.
oncologist and neuro convinced rituxan is working, saw oncologist again in early december 2005 when he put me on a rituxan infusion every 2 months schedule (that would have been the 5th infusion in december).
neurologist drops IVIG back to once weekly.
rituxan infusion february 2006 (6th infusion).
rituxan infusion april 2006 (7th infuxion).
awaiting this friday’s infusion which will be the eighth.
so far, around 7 to 10 days post rituxan infusion i begin to feel stronger. i continue to gain strength for about one to two weeks and then hold steady until next rituxan infusion (so far).
that’s about it i guess

Allaug, when we discussed Rituxan, my neurologist referred me to an oncologist/hemotologist. She told me that only an oncologist , a cancer doctor, could prescribe Rituxan, at least here in Colorado. It is considered chemotherapy and only approved for non-Hodgins lymphoma and some other cancerous diseases like Waldenströms macroglobulinemia. He checked for both and ruled them out. However, the blood tests did show a very small amount of monoclonal antibodies suspected to be MGUS – in addition to the PDN. But it probably wasn’t sufficient to justify the high cost of Rituxan.

You are right, I should get off the pot and call the company.:o

I had cidp symptoms that became worse over the years. The IVIG/cellcept treatment I was on for years was no longer working. I went through the same insurance fight as Eric, but luckily they didn’t take as long to approve Rituxan.

I was unable to walk without help, and the atrophy in my hands and feet was also getting worse. I took my initial Rituxan once a week for four weeks, and then every 2 months maintanence dose thereafter. I felt improvement after the first week and by the fourth week i was walking again. That was a year ago or longer, and so far I have not lost ground except for the time I got pneumonia and the cidp kicked in to high gear.

btw, rituxan is much less expensive than ivig longterm in my case. One would think insurance companies would jump at the chance to stop paying for ivig.

Yes the symptoms for me now are the atrophy and constant fatigue. I have permanent distal weakness due to the atrophy. I did have slight reflexes in my knees a week ago for the first time since 1996. I do not know if this means I am getting better, but maybe just not getting any worse. Either way I am happy.

The doctors have offered no cause for my cidp. The thing I heard that makes the most sense to me is this: autoimmune diseases are hereditary. Not necessarily the same autoimmune disease, but autoimmune disease in general.

I had strept throat during a very stressful time in my life. At this time I noticed the very tips of my pinkies were numb. So, likely the illness and the stress together worked on my predisposed immune system to give me cidp. Thats my theory anyhow.

I am still getting my Rituxan every 2 months as a maintenance dose. My neuro feels that this is necessary as do I. I dont know if I stopped the Rituxan if I would be okay or not. I will not let a doctor or anyone else gamble with what I have left as far as useable healthy nerves and muscle.

I asked about the B cell count and the oncologist told me that would be a very complicated test (probably expensive and they couldnt get reimbursed for it). They take counts of red and white, and both are normal and undisturbed with Rituxan.

If you have any more questions feel free to ask, and I will give you any information I have.

John

[QUOTE=JohnC] The thing I heard that makes the most sense to me is this: autoimmune diseases are hereditary. Not necessarily the same autoimmune disease, but autoimmune disease in general. [/QUOTE]
John, one theory I found in the medical literature about auto-immune diseases is called molecular mimicry with a genetic predisposition present. It is pretty complicated but I’ll try to explain it: When our immune system looks at a foreign intruder (antigen), a microorganism or even immunization, it only looks at a small part of the long chain of amino acids. What part gets looked at depends on our genetic makeup. Since there are only 20 different amino acids that can be used as building blocks by the intruder as well as our own body, it is possible that one section of the intruder, the one that gets looked at, is identical to our myelin. And bingo, auto-immune disease starts provided it gets missed by another self-protection that is built into our immune-system (that part I don’t really understand yet).

There has been a lot of research in this area. For example, researchers have been able to induce an auto-immune disease (encephalomyelitis) in rabbits by injecting them with parts of the hepatitis B virus which shares a section of just six amino acids with myelin.

I am attaching a simplified picture that illustrates it. On the left you see the antigen with a sequence of 5 building blocks and on the right is the myelin with 5. The sequence for both is different. But if you look at the middle part, the part that gets looked at, it is the same on both sides.

[IMG]http://www.ourbluemarble.us/forum/Autoimmunity.jpg[/IMG]

Allaug,

Yes, the oncologist is the one who has to be in charge of administering the rituxan. Since rituxan was originally developed for non-hodgkins lymphoma and oncologists are more experienced at giving it, I guess they would rather have the oncologists administer it. 🙂

Thanks for the great information Norb. You explained it very well. I now have a better understanding of the exact process that occurs. Can you point me in the direction where you found this info?

It’s from a Scientific American special issue “Life, Death and the Immune System,.” The chapter is “Autoimmune Disease” written by Lawrence Steinman. The book is out of print but you can still get a new one for under $5 at amazon.com

John, Glad I was clear enough. Sometimes I get carried away, you know.
What I forgot to point out is this: There have to be at least two or three conditions for an autoimmune disease: Heredity alone is not enough. In addition there has to be a trigger like a virus infection and a malfunction of our immune system that stands on guard and destroys anything directed against our own body. The article doesn’t mention that last part, I believe. That is mentioned in another article in the book: “How the immune system recognizes the body”.

[QUOTE=Allaug]Norb, If I were in your situation, I would have called this SPOC, if it’s possible, and asked if they had received my letter, and what had been done about it so far – but then I’m not the patient patient type!:mad:

Good luck:)[/QUOTE]
Thanks, Allaug, for kicking me in the butt. I just called Genentech and got the information I needed on their Single Point of Contact Reimbursement program. I need to go back to the oncologist or find another one willing to precribe it and get involved in this program. They gave me a special website that explains it all. I printed out many pages to take to the oncologist.

Basically, they don’t give you Rituxan for free. They assist you or your doctor in obtaining reimbursement through your own insurance or, if that fails, through some charitable organization. This is what I believe happened in Eric’s case. His BCBS insurance company ended up paying.

The site is: [url]www.spoconline.com[/url]

Allaug,

My experience with Cidp/MGUS and Rituxan is this:
I was diagnosed in June of 2004. My neuro began with Plasmapheresis and it helped a wee bit with strength. I heard from one of the Posters about his experience with Rituxan. I asked my neuro whether I could try it. He had never heard of it for my dx but he was willing to ask the oncologist. Subsequently I was treated with infusions once a week for four weeks with the intention I would get another series in six months. However, in six months I had moved from MD to IL and my currrent neuro would not refer me for treatment since I am holding and not worse. Upon stopping plamapheresis I began to lose ground. At that time I was put on Prednisone 80 mg. which picked me up well. I have been gradually and slowly tapered off of it.

Over a period of time now I have not deteriorated and have some sensory return as to temperature and feeling (pin prick) in my feet and lower legs which I did not have before.

Recently I saw a new oncologist for the MGUS oversight. She has heard of the Rituxan and is willing to do some research on the study that was running at NIH. If there are positive results, she will talk to the neuro and hopefully I can get the second series.

Thanks for asking your question. I, too, was hoping to hear from more folks who have tried Rituxan.

Peace,
Pat

John, here is some more food for thought: Remember I mentioned earlier that they found that the hepatitis B virus shares a sequence of six amino acids with myelin. After writing that I remembered that I heard from a number of people on this and other forums that they either had hep B or had received vaccinations against, myself included, before they came down with GBS/CIDP. Coincidence? I don’t know. I suspect hep B is not the only one that has something in common with myelin given that there are only 20 different building blocks, i.e. amino acids.

Norb, I can not remember exactly, but I had some sort of immunization about a month before coming down with the symptoms. The Hep B thing sounds very familiar to me. I will try to get my medical records from the doctor that gave me the immunization. I am betting that I had a hep b vaccine.

Hi Allaug,

I cannot reply from experience, but as a caretaker of a daughter w/cidp, I research this topic in anticipation of future treatments to discuss w/neurologist.

I really wonder what makes Rituxan work for CIDP-patients, …… but we have to know a lot more before Rituxan can be a usual part of CIDP treatment.

Here’s a link to Neurology Journal containing the full article discussion of Rituxan/CIDP that you might like to take with you, next time you see Doc. It is one of several (sorry – don’t have links readily available atm).

[url]http://jnnp.bmjjournals.com/cgi/content/full/74/4/485[/url]

Also, I came across a drug company that is actively working to patent a compound drug specifically for CIDP. Ceptor claims to develope drugs exclusively for orphan diseases, and has CIDP in their lineup. May be worth keeping an eye on.

[url]http://www.ceptorcorp.com/[/url]
One more thing – I don’t understand much about MGUS / igM, but I had saved some info – mabe it is of use to you or Norb. I found it on the FDA site while looking for gbs/cidp.

Therapeutic Exchange Plasma Collection of plasma from patients diagnosed with Guillain-Barre and who have developed high titers of IgM antibody to Cytomegalovirus Community Blood Center of Greater Kansas City
4040 Main Street
Kansas City, MO 64111
License 0302

cd

Thanks for the links from me, too, CD. Actually, the test indicating a high level of antiMAG IgM in my blood was done at the lab at the Department of Neurology at Washington U. This department is headed by Dr. Pestronk, the principal author of the journal article.

While Allaug was able to get Rituxan in Norway, here in the US I’ve run into a wall so far. Rituxan here is only approved by the FDA for nonHodgkin’s lymphoma and similar malignant diseases. My insurance company, Aetna, considers it experimental for CIDP and won’t approve it.

IVIG and steroids have not helped me much but I have not given up. I probably will see another oncologist willing to prescribe Rituxan as a medical necessity. Another route I mentioned on this thread earlier is to work with the Rituxan manufacturer directly. A third one is my effort to get the US Department of Labor in Washington to accept my claim under Workers’ Comp since my CIDP started while a federal employee as Peace Corps volunteer in Thailand. They rejected it earlier because they had no record of my complaint about numbness in my feet.

This morning I filed for an appeal hearing submitting a sworn statement asserting that my current neuropathy started in 2001 in Thailand. I am hoping that it might be easier to get the right treatment through them instead of a private insurance company. If accepted I’ll probably be the first CIDP patient ever under Workers’ Comp.

[QUOTE=Allaug] I thought that the monoclonality referred to me having an abnormal number of B-cells that produced the IgM which is the culprit in my and Norbert’s case. [/QUOTE]
Allaug, I am still pondering what you said. Didn’t have much time to really think about it yet. We just returned to our house in Ft. Collins yesterday for a five day retreat from babysitting in Denver and the unusual heat wave. Sleeping in a partitioned garage without windows in 38 Celsius (100F) isn’t much fun. Here we have airconditioning.

Allaug, here are my first thoughts. I think I did this before. Under normal circumstances, an antigen stimulates our immune system to generate [b]several different[/b] antibodies matching different sections of the amino acid chains of the antigen presented to them by (I think) macrophages via an MHC molecule. The structure of MHC differs from person to person, hence our genetic predisposition for CIDP or PDN.

Each of these antibodies comes from a different B-cell. I don’t know how it is possible to determine that a particular group of antibodies goes together and thus make a determination that they are [b]polyclonal[/b]. That may be a question for Threads.

Now, if there is a malignancy, just one single B-cell may get out of control and proliferate creating large amounts of monoclonal antibodies. My thinking is that in our case, antiMAG IgM neuropathy, there was an immune reaction to an antigen at one time, possibly a bacteria because they are the ones usually targeted initially by IgM rather than IgG. The immune system started to create a group of [b]polyclonal [/b] IgM antibodies. Only one particular one out of the group attaches to MAG. It still cannot be called [b]monoclonal[/b].

Allaug, here are my first thoughts. I think I did this before. Under normal circumstances, an antigen stimulates our immune system to generate [b]several different[/b] antibodies matching different sections of the protein chains of the antigen. Each of these antibodies comes from a different B-cell. I don’t know how it is possible to determine that this group of antibodies goes together and thus make a deterrmination that they are [b]polyclonal[/b]. That may be a question for Threads.

Now, if there is a malignancy, just one single B-cell may get out of control and proliferate creating large amounts of monoclonal antibodies. My thinking is that in our case, antiMAG IgM neuropathy, there was an immune reaction to an antigen at one time, most likely a bacteria because they are the onres usually targeted by IgM. The immune system started to create a group of polyclonal antibodies. One of them attaches to MAG. It still cannot be called [b]monoclonal[/b].

Allaug, all different types of antibodies, IgG, IgM etc are produced by mature B-cells, also called plasma cells. Rituxan takes out [b]all[/b] B-cells thus reducing the number of IgM antibodies including the autoantibodies eating our myelin. Strangely enough, according to the article by Pestronk, IgG antibodies are not reduced. Therefore we are still protected against infections.

I think the excessive “cancerous” antibodies produced by MGUS are [B]not[/B] the same as the antiMAG IgM antibodies attacking the MAG portion of the myelin sheath. The US in MGUS means “uncertain significance”, in other words we don’t know what it does. I’ve been diagnosed with minor MGUS [b]in addition[/b] to the antiMAG IgM neuropathy. To have antiMAG IgM’s does not mean these are monoclonal. Out of a range of polyclonal IgM there is one that happens to like our MAG.

In fact, a monoclonal antibody in the serum, also called M-component (M for myeloma) does not necessarily indicate that a person has a cancerous condition like multiple myeloma. The M-component appears in people’s serum as they age. It is also called benign monoclonal gammopathy. (From “Case studies in Immunology” by Rosen-Geha)

I also remembered again – seeing it in this book – how we can tell polyclonal from monoclonal antibodies. Polyclonal immunoglobulin shows up as a smear in electrophoresis. Monoclonal ones show up as a tight band. In the attached picture on the left shows normal serum, on the right a monoclonal IgG band of a person with multiple myeloma.

BTW, in my previous post I was wondering how it is posssible to identify which polyclonal antibodies in one cluster of antibodies directed against a particular antigen belong together. I now realize that this cannot be done with simple methods like electrophoresis.

Hope this helps and doesn’t cause more confusion.

After I added the previous post, I came up with another puzzling question.

My blood tests show that I do not have any monoclonal antibodies. However I do have a significantly larger amount of IgM antibodies (twice). A large number of these react to MAG (myelin associated glycoprotein), hence my diagnosis of antiMAG IgM neuropathy, also called PDN. Now, presumably, my immune system at one point reacted to an intruder, an antigen (virus, bacteria, immunization) and started producing a series – let’s say 100 – of differently shaped antibodies, each one targeting a different segment of that same antigen. One of the 100 happened to match the shape of the MAG. Bingo, my CIDP (PDN) started. Eventually my immune system must have gotten rid of the intruder, the antigen. Unfortunately, the MAG on the myelin is always there – at least for a while and my immune system eagerly continues producing the antiMAG IgM antibodies.

My puzzling question is what happened to the other 99 kinds of IgM antibodies? There is no longer any use for them. But they apparently continue being produced or else the antiMAG IgM would show up as monoclonal – or not?

Confusing? It is to me. Allaug, where is Threads?

Yes, I would like her address. BTW, my CIDP/PDN also is mostly sensory.

This post is way above my head, also so much of the time I was at my very worst back in 2002 it was actually my husband listening more than me. But at Mayo where I was inpatient for 3 months after my very rapid decline, I remember having so many tests (bone marrow biopsies twice, nerve root biopsy which was actually a surgery on my back to remove spinal nerve roots, sural nerve root biopsy) all done just so they could rule out lymphoma & leukemia.

When I switched care to the U of M after Mayo said they had exhausted all treatments (PP, IVIG, & steroids), I did ask my new neuro about rituxan. I remember him talking all about the B-cells vs. the T-cells, & he said that rituxan would not work for me. Then he proceeded to give me the large dose cytoxan protocol. I am very happy that it arrested my CIDP, but often wonder if the damage done those first 9 months would have been less had I been given this protcol much sooner.

But I was given PP, IVIG, & steroids all within the first 3 months, PP right away in April while I was still fully functional, & IVIG once I has had deteriorated to a wheelchair. Why is it that some seem to suffer axonally damage so quickly, & others just myelin sheathe damage, even though their nerves can be attacked over & over again? I think I knew from the very beginning that my damage would be axonal, even though all of the neuros at Mayo were telling me that I would get back to normal. I guess only we truly know what we are feeling?

Also, given a choice I would much rather have sensory damage as opposed to motor damage. I never minded being “numb” from the neck down, it is the lack of strength that I mind the most. Also, I assume the fatigue would be much less with sensory damage?
Pam

Hello Pam, sorry you had to go through all this. I was wondering what your experience was with the cytoxan. Besides the rituxan, this seems to be the only other option vailable to me. IVIG and steroids just didn’t do it for me. So far I am very hesitant to agree to the cytoxan because I am afraid that the side effects are worse than the disease itself.

I don’t have a clue why some people tend to have more sensory and others more axonal damage. All I know is that my variant, antiMAG IgM neuropathy, also called PDN, tends to be primarily sensory, progressing slowly. It doesn’t attack the myelin directly but MAG, a protein associated with myelin. From there the myelin gets damaged. How I don’t know. After five years of sensory damage, only this year am I experiencing the first motor impairment, so far not really serious. But if they can’t find a way to arrest the progression, I am afraid I’ll also end up in a wheelchair.

an ex-Minnesotan

P.S. what did you think of the neurology department at the Mayo clinic? We’ve been to Rochester several times but never inside Mayo.

Norbert,
I guess technically I was at St. Mary’s Hospital, which is affiliated with the Mayo Clini. But all of my neurologists were from the Mayo Clinic. I was not all that impressed, as I saw mostly interns at the hospital, although I did see my main neuro at like 5:30 every morning. After having seen Dr. Gareth Parry at the U of M I would never go back yo the Mayo Clinic. They are very good at diagnosing, but very conservative at treatments, at least for CIDP.

The last neuro I saw there basically told me there was nothing more they could do for me & that the nerve destruction would just keep progressing & eventually I would die when it went into my diaphragm & lungs. It was Dr. Parry who put me on the cytoxan protcol & I really had no side effects. For me it was no different than the 44 IVIGs I had already sat through weekly.
If you want details, just send me a private email.
Pam

Dear friends, it is good to be back. I have been a little off colour in hospital intensive care for 8 weeks, all due to complications of kidney failure. I own the copyright of both articles please feel free to post them up if they are of any interest to others. DocDavid

PS how do I add my avatar?

Doc David welcome. We can’t post an avatar; this forum didn’t enable that feature yet. But in your profile you can add your picture.

Sue

[QUOTE=DavidBod] feel free to post them up if they are of any interest to others. DocDavid [/QUOTE]

DocDavid, glad you are back. Since I have your article in pdf format, I thought it would be easiest if I copied it to my site and give the link here. It is totally separate ferom my website. Hope this is OK with you.

[url]http://www.bluemarble.de/GBS_CIDP/DocDavid_Rituxan.pdf[/url]

[QUOTE=DavidBod] feel free to post them up if they are of any interest to others. DocDavid [/QUOTE]

DocDavid, glad you are back. Since I have your article in pdf format, I thought it would be easiest if I copied it to my site and give the link here. It is totally separate from my website. Hope this is OK with you and the others on this forum.

[url]http://www.bluemarble.de/GBS_CIDP/DocDavid_Rituxan.pdf[/url]

When I was going through it these also were on Rituxan
John Crambes Tullahoma, Tennessee. 1999 Drug firm pay.
Connie Connor Massecheusets
Fweng Chapel Hill. IgG MGUS . ANAN 1:160
ShellyW Rio Rancho. New Mexico. Dr. Ronnie Garner Albuquerque. New Mexico
KathyC Illinois. Dr Ronnie Garner.
Tona Huiner
I have not heard from them lately and can only hope the improved suffiently to leave the forum. DocDavid

I am still here doc. Glad to see you back. The only setback I had was when I got pneumonia. The cidp hit me fast and hard during that time. I lost some more hand function in a matter of days that has not returned. Other than that its been pretty steady with the Rituxan infusions every 2 months.

John

Hi Doc,
I’m still here too. After 8 infusions of Rituxan I am definitely a little stronger. but I am now on Cytoxan, 3rd treatment two weeks ago. I haven’t gotten worse which I’m happy about we are going to try to go 3 weeks between ivig next month.{wish me luck}. I did not have to worry about payment for Rituxan as I joined a trial for the drug. I have lupus also.
connie

Hello , best wishes to all .
I,m both a care giver as my wife has CIDP for more than 20 years and now myself a chronic polyneuropathy , under study. She was one of the first patient to receive IVG in Florida , it took a while to convince the neurologist . She does produce M protein , no sure yet if it is anti Mag
I’m trying to collect as much information as possible on Rituxan , IVG and CIDP , I ‘m reading the reports of Eric, Dr David and others users.
So far none of the local neuroologist are familiar with Rituxan and will not prescribe it, my wife also is afraid as she suffered complications (Acute Renal failure.(Acute tubular necrosis) , But now after 7 hemodyalisis renal function is back to normal…
It was secondary to hemolysis during plasmapheresis , (rare occurrence, really unkown what event cause the breaking of her red blood cells during the plasmapheresis . the renal was not due to the IVG , ) . She use non sucrose (Gamunex) , I trying to convince her to use Rituxan , but we want and pin point thru a neuro panel the type of monoclonal she produce, plan to send the blood to Washington University in St Louis , to Dr Allen Pestronk . There are several articles in the literature about use of Rituximab , Dr Pestronk wrote one of them. If her polyneuropathy is definetly associated with IGM antibodies , and with experience of users and reports in medical literature , then it will be worth a try …I will be back in a few days…
Wonderful people here , and we REALLY need to help each other . Forgive my english , as it is not too good..(As second language) ..lol Juan
.

Juan, welcome to the forum. I am sure you”ll find it very helpful. Your English is fine.
As far as I know, there are only two on this forum with antiMAG IgM, Allaug in Norway and I. I was diagnosed with it at Dr. Pestronk’s lab at Washington University last August. I received IVIG’s with only small improvements. I had to stop taking Prednisone two months ago because it had bad side effects. Now I am getting IVIG again. I am still hoping to get Rituxan some day. The main problem with it here in the U.S. it is only approved for cancerous conditions like nonHodgkin’s lymphoma. Insurance companies normally will not pay for it and it is difficult to find a doctor who is willing to fight for you.

Allug,
Can you or someone explain to me new to GBS forum, wht is CIDP and how is it related to GBS?
Thanks for the info.
TMR’s Mom, Nancy

Greetings,

I have got back to reading this forum as life forced me to concentrate on other things. I have had a chance to read the Rituxan posts tonight and I also have an IgM Lamda form of monoclonal gammopathy. This forum has answered and created more questions for me. I glad I read it.

My Neurologist has directed to my Oncologist that he wants me to take Rituxan, to see if I will benefit from it. I have a bad infection in my left foot and am on IV anti-biotics, that seems to be working. I will have to wait until the infection is eliminated. The Drs. are trying to get the insurance or anyone else to pay for the treatments.

We’ll see what happens…Paul.

Just realised that I missed these posts about Rituxan and Norb and Allaug’s discussion and questions about the excess of antibodies and so forth.
We had been in Germany and I returned with another wearing health issue so I missed out on the forums a lot.
Must read some of it again and think!

Paul the Pastmaster. Try reading my PDN site at [url]www.pdn-info.co.uk[/url] about neuropathy with monoclonal gammopathy or paraprotein. There are some parts I need to update when I find the time and freedom from pain. That’s been bad recently, inflicted by mini-lows. 2 other neuropathy associates in our area have been similarly affected. Carolyn B described herself as zombified by it! I recognised the accuracy of the description.

I just finished a second round of Rituxan – once a week for four weeks.
Now my neurological problems are worse. I don’t remember this happening with my first round. However, at that time I was also on Predinsone. Has anyone who has received Rituxan experienced this exacerbation?
Peace,
Pat

I’d Suggest Doing A Search On Google For Retuxan For Cidp. Quite A Bit Of Useful Information Will Come Up.:)

Hi Everyone,
Sorry to have kept away for so long. I was the first person to try Rituxan through my doctor back in April 2003. I currently receive Rituxan avery 12 weeks. It has kept my symptoms at bay and I have hit a plateau, which I am o.k. with since I can now function at about 92%. During the winter months, I also have IVIG treatments every 6 weeks to keep me from getting all the bugs that circulate at a high school of 2800 students! My first treatment I went into anaphaltic (sp?) shock about 45 minutes into the treatment. It was really scarry, but I got through it and have never had another reaction since. They now give me everything under the sun before the treatment to prevent a reaction. I do not have paraproteinaemia. If I can answer anyones questions, flee free to e-mail me. By the way, the last time I had a treatment the nurse mentioned a new drug called Orencia that targets T-cells.
Shelly

Shelly, your post got me interested since up to this point I have not been able to get Rituxan because it is not approved for CIDP. I just looked up ORENCIA hoping it might be an alternative for me. What I found out: it is a drug used for rheumatoid arthritis, “a biologic that works at the T-cell level, blocking one of the signals that causes a T-cell to become active”.

Because Orencia affects T-cells, it does not appear to be an option for me in my opinion. With my variant of CIDP, antiMAG IgM, my problems are B-cells. “Threads”, an immunologist who used to post on this forum, even was concerned that in my case suppressing T-cells with Prednisone may be counterproductive. There are some types of T-cells, so called T-Suppressor cells, that keep B-cells under control, she explained. Orencia might in the end just have the same effect as Prednisone.

Hi Allaug & Norb,
I was diagnoised in June, 2001 with CIDP. After reaching 80mg of Prednisone daily and receiving IVIG treatments without any relief of symptoms that were spriling downhill quickly, my treating doctor began giving my Cytoxan treatments along with the IVIG. It began to turn the disease around, however after 15 months of that grueling regimen my doctor suggested trying Rituxan along with Cellcept. I was hesitant for several months but after becomming depressed about all the time I was spending hooked up to an IV, I decided to try it. I got pneumonia about a year after being on Rituxan and Cellcept. I stopped taking the Cellcept and have not taken it ever since. The Rituxan seems to be keeping me on the up side by itself. (so far, knock on wood!) My doctor is Dr. Ronnie Garner. I believe I saw someone reference him earlier in the post. Norb-maybe the new drug I mentioned earlier is just for rheumotoid arthritis – I was on my way out from a treatment and the nurse mentioned it to me. They treat a lot of people there and she may have thought that’s why I was there. I’ll check into it more for you when I’m there next week and let you know.

I have been missing out on this thread having been distracted by a family death and supporting 2 new CIDP cases, one having a difficult time.

Reading through again I was reminded of an article ‘Management of Inflammatory Neuropathies’ by Dr Robert D M Hadden and Professor Richard A C Hughes of London. It appeared in Journal of Neurology Neurosurgery and Psychiatry 2003;74:ii9.

It is online at [url]http://jnnp.bmj.com/cgi/content/full/74/suppl_2/ii9[/url]

Of interest to this thread is:’About 10% of patients with an acquired demyelinating neuropathy have a paraprotein. When a paraprotein is detected, the patient should be investigated with a skeletal survey looking for an isolated plasmacytoma that may be surgically excised, and a bone marrow biopsy looking for myeloma, etc. Treatment of the cause of the paraprotein may improve the neuropathy. Most paraproteins are monoclonal gammopathies of uncertain significance (MGUS), and not usually treated, but the paraprotein concentration should be monitored regularly looking for a rapid rise that may herald malignant transformation. Paraproteinaemic demyelinating neuropathy is a heterogeneous group of conditions. The following may be distinguished.’

It continues:’The best defined and most common syndrome is a slowly progressive, predominantly sensory neuropathy associated with IgM paraprotein, in which the paraprotein is a monoclonal antibody to myelin associated glycoprotein (MAG). Electron microscopy shows characteristic widely spaced myelin. There is often a postural tremor. The disease usually progresses slowly over years and is rarely disabling. Nerve conduction studies usually show uniform symmetrical conduction slowing and with notably prolonged distal motor latencies. Treatment is difficult. Mild slowly progressive disease is best left untreated. In more severe cases, IVIg has a transient beneficial effect (level 1b evidence). Fludarabine and rituximab have seemed effective in small series of severely affected patients.’
Norb and others we should note: “the paraprotein is a monoclonal antibody to myelin associated glycoprotein (MAG)”. paraprotein/monoclonal gammopathy!:rolleyes:

During the last six and a half years, my husband John has had PP, 80mgs. prednisone, and Avonex. Last winter, under the care of a new neuro, he started Imuran and IVIG. Small improvements, but in early summer, he started Rituxan…he was able to get it since he also has MGUS. Four treatments, a week apart, then another last month. Skin biopsies and a whole gamut of other studies showed objective improvement with the Rituxan. The oncologist is willing to treat him every 4 months, but neuro wants every 6 months. He also suggests a monthly IVIG as a bolster.

I have to say that John has felt much better, both physically and mentally, since the Rituxan. He still has pain in his feet, but not the excruciating pain he had prior. I hope that more people will be able to benefit from Rituxan.

just skimmed this – great thread, I have to sit down and read this whole thing now

What side effects did you get from Rituxan? It seems that a lot of ppl are willing to try this drug for CIDP and the ones that already tried it are very happy with the results. My husband had an EMG done on Friday, after 7 months of azathioprine (100mg a day) he can’t show or feel any improvement but he could feel some electric shocks in his lower legs with the EMG which he did not feel 7 months ago. We’ll see the neurologist on Monday for a full report from the EMG and we are thinking to suggest Rituxan. Please it is very important for me to know from your experiences what to expect with Rituxan. thanks for any input

I have had two infusions of rituxan now and experienced some fatigue the following day after each, but no other side effects. A few days after the second infusion I sensed some increase in energy and overall well-being for several days, which was then completely reversed by my regular infusion of IVIG, which completely wiped me out.

My question to those who have received rituxan: Did you continue on IVIG and did you experience any similar problem? This experience is way too limited to draw any conclusions, but it has me a bit concerned. Any thoughts from anyone?

Grant

This may be old news for most but for other newbies like myself this may be of interest. Mayo Clinic is conducting clinic trials for patients with neuropathy associated with paraproteinemia(also called MGUS neuropathy). I guess I am not to post web addresses but the info can be found by searching Mayo’s clinicaltrials.edu site. It is IRB Number 1191-04. The rituxan is supplied free of charge. Along this line, has anyone ever posted the cost of rituxan? Is it more than IVIG?
GREAT FORUM!
Morris

[B]Morris[/B], thanks so much for posting the info about the Rituxan trial. I am definetely going to contact Mayo to find out details. I’ve been trying to get Rituxan for some time without success because it is not aprroved for CIDP. I think one of my diagnosis says I have MGUS but I have to wait to check my records as soon as I get back to the US later this week.

Norb, sure hope this works for you. I wanted to take part in it also but had to decline for now because of time requirements to be off of IVIG and heavy steroid treatment. Maybe later. Lots of luck. Morris

Morris,

The cost of rituxan is about $5,000 for 1000 mg. In the long run, the therapy costs less than IVIG because fewer infusions are needed.

Grant

Hi friends,
This is my first posting to this discussion board so I don’t really know exactly what I am doing. Nevertheless, I’ll give it a try because I would really love to find someone else with the same thing as I have recently been diagnosed with: IgM MGUS. I drew the short straw in the statistic of 1 out of 5 with MGUS having peripheral neuropathy, which was the reason I went to see the doctor in the first place. After about a year of blood tests and EGM tests, etc. they narrowed it down to IgM MGUS.
I can still walk (albeit a bit awkwardly), but I had to give up running. It is in both my feet and hands now.
The hospital has prescribed Rituxan and Roche has agreed to lower the cost a bit. However, Mr Roche will still be able to afford a fine new car after a couple of series of injections. They are quoting about $16,000 less 10% for a one month series of four injections.
First though, the hospital took a blood sample today for the Antimag test (anti-myelin-associated glycoprotein). The results should be available in 3-4 weeks.
I have spoken to the Mayo clinic about a trial they have specifically for this. Surprisingly there are only 6 members in the trial. (I thought these trials were with hundreds of people). There is another trial underway in France, but that is not quite so easy for me to get to (I live in Canada).
I’ve done a lot of research into all of this stuff, along the way thinking I had CIDP or Charcot-Marie Tooth, etc. Other worse self-inflicted diagnoses have guaranteed more than one night without sleep.
The Mayo clinic mentioned people with various stages of neuropathy damage, and I am wondering how bad this can get. At this stage, I have to hold on to the wall when I close my eyes in the shower so as not to fall over. And I am not too good on the roof anymore cleaning the gutters. I fell with a chainsaw in my hand a few weeks ago so my wife stays clear of me when I am cutting wood now. Also, no more water skiing and I almost killed myself trying to skate backwards last winter on the ice.
So….if anyone out there has IgM MGUS, it would be great to share stories and learn as we go.
Good luck to all.
Andrew

Hello Andrew. Welcome to the family. Several of us on the forum have AntiMag IgM including myself. As you probably know, this variant of CIDP ( sometimes called PDN – paraproteinaemic demyelinating neuropathy ) is a very slowly progressing form.

Mine started with slight numbness in my toes back in 2001. Now, I can no longer drive. I have to use a rollator to walk and balance because my feet are totally numb and there is some numbness up to my knees.

About a year ago, my fingers started going numb too. Today, I can only hold a cup if I use both hands. I drop things all the time. I cannot put caps back on medicine tubes, type, or do any fine motor work at all. For typing, I now use a dictation program called Dragon Naturally Speaking. In addition, my tongue is getting numb.

I’ve been trying to get Rituxan for about 2 years but insurance would not pay because, here in the U.S., it is only approved for Non-Hodgkin’s Lymphoma or Rheumatoid Arthritis.\

About 2 years ago my neurologist sent me to see an oncologist in Denver to rule out Waldenstroem’s, a slow growing form of lymphoma. This can sometimes be the underlying cause of AntiMAG IgM. Back then, the oncologist could not find enough evidence to confirm it, but suspected that evidence would develop.

Just a few weeks ago, I saw another oncologist here in Fort Collins where I live. After many blood tests, he did a bone marrow biopsy and found lymphoma…not significant enough yet to be Waldenstroem’s, but enough to show that cancer is my underlying culprit. After that, he ordered a PET scan to check for any metastasized cancer.
It came back negative.

He was then able to get approval for Rituxan which I will be starting on Monday. I am really hopeful that the treatment will bring an end to my now quickly worsening symptoms. I am aware that there are a number of reports of success with Rituxan but it doesn’t work all the time.

It may be too late for my feet. If the nerve axons are damaged they may or may not grow back. I am hoping that at least my tongue and hands will improve.

So, hope this gives you some information you were looking for. If you want to read more of my story in detail, there is a link below with my signature. Keep us posted about how you are doing.

Andrew,

Im not sure if you know that your post has been moved by Pam, which was a really good decision – Now you have your very own post in the CIDP section with a few answers. 🙂

The strange thing for me is, I have no MGUS. The rituxan works better for my cidp than any other drug previously taken.

[QUOTE=JohnC]The strange thing for me is, I have no MGUS. The rituxan works better for my cidp than any other drug previously taken.[/QUOTE]
John, actually this does not surprise me all that much. Rituxan gets rid of B-cells which in many cidp cases create, when activated, the antibodies which damage the myelin.

Since Rituxan is not approved for cidp, there probably are only few or no reports about its effectiveness for this disease. How did you manage to get it?

Well, I was in a self funded group insurance plan when I began Rituxan.

Im on medicare now, and they will under no circumstances pay for rituxan for cidp. The reason I was allowed to continue on it is because the makers of rituxan have a program called spoc. The main requirement is you make under 80k a year. No problem there since being on disability. [url]https://www.spoconline.com/spoconline/rituxan/SPOC/index.jsp[/url]

I am not quite sure about if I so easily flipped over to spoc because I have previously taken the medicine and had good results or if they will do it every time a doctor sees potential for the drug off label usage.

edited to say I love my doctors and nurses for many reasons, but maybe the biggest is they never stopped fighting for me when I became bedridden and could no longer walk, or even feed myself.

[QUOTE=JohnC] Im on medicare now, and they will under no circumstances pay for rituxan for cidp. elf.[/QUOTE]

I finally received copies of all my medical records yesterday. There I read that my doc actually tried Medicare with my original CIDP diagnosis and they said NO. I also was told that Medicare never pre-appproves anything. If charges are submitted with a non-approved diagnosis they just reject it. Good thing you have found a different way.

Yesterday I had my first Rituxan treatment with the new Medicare approved diagnosis of “B-cell lymphoma” which appears to be the underlying cause of my CIDP with antiMAG IgM. Everything went well, 3 more weekly treatments to come.

Norb
Congratulations on the Rituxan treatment! From everything I have read in connection with treatment of MGUS IgM, the drug seems to have positive effects. I also read your web site which was really interesting and informative. Most of all, it highlights to me the need to do things as quickly as possible because there seems to otherwise be no way of stopping the relentless nerve damage and progression of the neuropathy.
I am still leaning towards enrolling in the Mayo clinic trial even though it means almost commuting between Toronto and Minneapolis. It would at least cover two series of injections (approx one year) before I would be subject to costs of about $30,000 per year.
You know all those wonderful things you hear about the medical system in Canada? They are true if you drive drunk headfirst into a wall on a motor cycle…but forget about medication for IgM MGUS.
Let me know what the side effects are like with the Rituxan (if any). I am most interested to hear. Also, how soon you can notice any improvement. Good luck with it, Norb. I sure hope some sensory nerves recover.
Andrew

Andrew, I’m glad you found my website helpful. About the trial at Mayo Clinic, it was my understanding that they’re only looking for patients with MGUS unless they have two trials going on. From another CIDP patient I heard that they only have six patients in the trial. I don’t know how they’re doing this trial but normally half of the patients get the medication and the other half get a placebo. So you never know what you’re going to get. By the way, Mayo Clinic is in Rochester which is about another 1 1/2 hours from Minneapolis.

The treatment with Rituxan on Monday went well. I had no reaction at all during the treatment except the double dose of Benadryl make me sleepy. Only at home did I get a little bit of a temperature and very mild body aches much less than what I often get from IVIG. The next day I felt normal again. There will be three more treatments during the next three weeks. At this point I do not know what the further treatment plan is. I have no idea how long it would take to see improvements if any. Nerves grow back about one millimeter a day. I’m not sure if this also applies to the myelin. It will take a lot of patience during the next weeks and months waiting for results.

Allaug, if the anti-MAG IgM did not show up on tests, do you have any idea how your hematologist determined what you have? My neurologist two years ago had my blood tested for anti-MAG IgM. The titer was 140,000 compared to less than 1500. So there was no doubt about it. I have no idea why she suspected it to begin with. I don’t think the test is routine. Perhaps she based it on the slow progression and the fact that my symptoms were only sensory.

Tomorrow I’m going to have my third Rituxan treatment and the fourth and last one the week after that. Except for a very slight temperature after the first infusion I had no reaction whatsoever. Last week they did a blood analysis and my white blood cell count had not changed at all. I don’t know if that really means anything but I expected it to go down. Rituxan is supposed to get rid of B-cells which make up around 5% of the white blood cells in serum. There is no change in my symptoms so far but I think the myelin needs time to regrow. So I have not given up hope yet.

I wonder if it was a good idea to get the IVIG so close to the Rituxan. The oncologist thought it would give me extra protection against infection but what if it interferes with the Rituxan.

[B]Allaug[/B], somewhere you said that you noticed improvements pretty quickly. Was that after the first of your 4 monthly treatments or after the last one. What was interesting is the fact that you also received Fludarabin at the same time. This seems to be a chemo drug used for B-cell lymphoma which is my diagnosis for the underlying condition.

Norb,
I don’t know the reasoning behind who gets rituxan & who gets chemotherapy, but I know that the reason that Dr. Parry prscribed cytoxan (chemotherapy) treatments for my CIDP was to wipe out my immune system. In other words, he kept me on monthly cytoxan infusions until my white blood cell count was down to almost 0. Then we stopped & waited to see if the CIDP was arrested (it was) & then it was a waiting game to see what nerves I would get back.

I finished chemo in Sept of 2003 & could feel more strength in my arms & legs by that winter, but didn’t get in to rehab to actually try walking until the summer of 2004. So for me it was very slow. The nice thing is that it was my last treatment of any kind. I was left with residual numbness below the knees, foot drop, lack of balance, & some weakness & numbness in my hands. But I do go out a lot, can drive again, go to water aerobics twice a week. I guess I lead a pretty normal life for someone of 54, but I do need a lot of sleep still, & guess I always will.

I hope your improvement comes faster, as we all know this illness is different for everyone. Best of luck…
Pam

Pam, most likely it’s the fact that it is only approved for non-Hodgkin’s lymphoma and rheumatoid arthritis plus the very high cost that people with CIDP cannot get it. Also I don’t know if it’s appropriate for typical CIDP since it only targets B-cells. I understand that T cells also play an important role. Cytoxin depresses the entire immune system and can be pretty rough on you. I don’t think I could handle it since I am 20 years older than you. It sounds like it worked pretty well for you.

Today I finished my third round of Rituxan without any reactions. I compared the new blood analysis with last week’s. This time the lymphocytes went down 14%. That sounds like good news since the B-cells take up between 11 and 16% of the lymphocytes. The rest is T cells and many various others.

One more treatment to go.

Take care

Norb

That does sound like great news…congratulations!!! This really sounds like
it will help you greatly…I’m so happy for you.

Tap…tap…tap…sigh…tap…tap…tap…still waiting on the mouse-ears pic.

😀 😀 😀

Miami Girl

[QUOTE=Miami Girl]Norb
Tap…tap…tap…sigh…tap…tap…tap…still waiting on the mouse-ears pic.
Miami Girl[/QUOTE]

It did happen. You missed it. Check out this thread:

[url]http://www.gbs-cidp.org/forums/showthread.php?t=3307&page=2[/url]

Allaug, yes, I need to be a patient patient. It is difficult sometimes after having struggled with this disease for so long and now finally seeing the [B]possibility[/B] of light at the end of the tunnel. You noticed I emphasize “possibility” because I still don’t want to get my hopes up too high. I am glad you clarified [U]when[/U] you actually saw results. Somewhere long time ago you said you saw results soon after. So I kept thinking this is the third week of getting Rituxan and nothing is happening — Allaug saw results quickly — that means it is not working for me. I know we all are different but our minds aren’t always rational.

BTW, we just got a new supply of delicious Jarlsberg imported from Oslo. It was $10 for 1000 grams.

I got fast results Norb, but Eric took over a month if I can remember correctly. Do not give up on it yet.

Norb

What a fantastic picture…and you love cheese!!! See, you do have some
side effects…lol…

Miami Girl

Norb
I sure hope that the Rituxan soon shows improvement for you.
Update here is that they took the Antimag blood test and sent it to Missouri for testing and I am waiting the results, which will determine whether I can take the Rituxan. I have had numerous emails back and forth with the Mayo clinic about their trial, but it is now sounding like it would be more expensive to join the trial than to stay home here and pay for the drug. It all boils down to the cost for the testing at Mayo. Although the drug would be paid for by Mayo, I would have to cover the cost of the testing (EMG, bone marrow, spinal tap, etc). Cost estimates are close to the cost of the Rituxan. Here in Toronto, the testing is all covered by medicare, but not the drug. When you factor in the travel costs, it ends up costing less to take it here. Too bad..because it would have been good to get a second opinion from the Mayo clinic and in addition, they have such a good reputation.
I’ve written the Ministry of Health here in Ontario to plead my case regarding coverage for the Rituxan.
Otherwise, am heading with my wife tomorrow to Australia and NZ for three weeks (combination work and some days vacation). The flight is awful because my feet swell up like balloons – numb balloons. It is really uncomfortable but as long as it does not do further harm, I guess I can live with it.
I have an apointment with a physiatrist when I get back. Could be that they will make an evaluation on disability. Driving is becoming a bit scary now because I can’t feel the pedals any more, unless I push hard…which is not wise in city traffic!!
Good luck with the Rituxan.
Best regards
Andrew

Dear Allaug
I am sorry that I did not reply to your message before this. I am still learning how to use the forum and had not noticed that there were other pages before page 9! Also, hello to others who wrote in reply to my first message.
I was thinking that emails would appear every time there was a posting but I guess not, so I will check the forum more often.
Thanks for your patience.
Kind regards
Andrew

Hello Andrew, I hope you had a good trip to down-under. When you get back let us know how you’re coming with your treatment.

I finished the last of four weekly Rituxan treatment November 5, again with no side effects. The oncologist wants to repeat the treatment every six months over a period of two years. So the next time we’ll be in May 2008. He could not tell me how long it might take to see improvements with my neuropathy – if the Rituxan worked. I have an appointment with my neurologist on Monday and will ask her. She will do an exam and EMG to establish a new baseline.

My hands are as numb as ever. While Carol my wife was in Denver for a few days babysitting, I kept busy fiddling with our computer. I managed to mess up the monitor cable bending one of the pins and had to get a new one after she came back. I’m not sure she really understands why it is so difficult for me to stay away from things. Sometimes it’s just hard to be patient.

That seems conservative considering I get mine every 2 months. I am curious to know why he chose this schedule. If you know, or could possibly find out, that would be great.

[QUOTE=JohnC]That seems conservative considering I get mine every 2 months. I am curious to know why he chose this schedule. If you know, or could possibly find out, that would be great.[/QUOTE]
John, I won’t see the oncologist again until early next year. I don’t know how he came up with this schedule. Basically, he is trying to treat the lymphoma and not so much the neuropathy. The protocol is probably the one for lymphoma. Of course my priorities are just the other way around especially since the lymphoma seems to be minor at this point.

Are you getting Rituxan to treat CIDP?

Norb, is that a side effect of Rit?;) you better behave, next time Carol will have no choice but to take you along!:D

[QUOTE=angel2ndclass22699]Norb, is that a side effect of Rit?;) you better behave, next time Carol will have no choice but to take you along!:D[/QUOTE]
Cheryl, it must have been a last-ditch effort of the mouse in me to keep control.:D

[QUOTE=JohnC]That seems conservative considering I get mine every 2 months. I am curious to know why he chose this schedule. If you know, or could possibly find out, that would be great.[/QUOTE]

Hi John
The schedule that Norb mentions is exactly the same as the one I heard from two other sources…one the neurological department at my hospital in Toronto and the other from the Mayo clinic. I should qualify that though by saying that that rythm is for starting treatment and they would evaluate the performance of the Rituxan to make sure it is working and likely to decide if every 6-months is the appropriate timing. Could it be that tests you took showed that it works, but that the effects wear off after 2 months?

With Rituxan not covered by Canadian health care for the treatment of IgM MGUS, your comment that a treatment every 2 months is what you require is kind of scary. That works out to almost $100,000 a year. Way more that I can afford!!

Would your doctor be able to comment on how the 2 month interval was arrived at?

It is pretty simple for me. Over the last several years I have shown a steady decline. My cidp is always there. The doctors intent is to slow it down, and if they over do it in the meantime, they feel its worth the risk (as do I). I have had remission of proximal symptoms, but never any sensory symptoms.

We have discussed scaling back when I felt I could. I have gone 3 months before with no bad result, but then again there have been times when I went 2 months and felt little positive change. In the overall picture, it seems best to get the infusion every 2 months.

Two days ago I saw my neurologist in Denver to establish a new baseline before — hopefully — the Rituxan kicks in. The neurological exam and the EMG showed what I already knew: my symptoms have gotten a lot worse during the last few months. If it works, with the anti-MAG IgM neuropathy symptoms should be getting better in a few months rather than weeks, she told me. Progress depends on the extent of myelin and nerve damage. Normally, improvements happen in reverse order. My tongue was the last to be affected. It should be the one to get better first. After that the hands and then the feet. In the meantime she wants me to get an electric scooter because she was concerned about my safety watching me maneuver with my rollator.

Mouse on Wheels!:D That will make you really hard to catch Norb! If you get one, watch out for Carol’s feet!!;) And you know you better order a wagon to attach to the back for Sydney!!:D

Norb, A power chair is great, I have a Jazzy 600. I can go anywhere independently for a change, and you dont get so tired out. I can really hit the Mall in Sioux Falls, leaving hubby on a bench watching girls.

One warning, unless its just a lady driver. Your walls and woodwork may take a beating!!!! I had it a year last July and no problems. It is a heavy duty to get around outside. Now if I could just figure out how to get it and me down the river bank to our pontoon. I had several bad falls and I feel very safe with the chair. Good luck and hope you meds work. I am still waiting to hear from Mayo. Patience“““““Regina

Norb,

I can’t believe you got approved and have already finished the treatments, that is great.

Dell’s dr. sent me an email saying Dell’s b/w still showed high lymp. and elevated SED. He wants him to take Rituxan.

Of course, my husband and I are very nervous. Dell is 3-1/2 years old. I am going to post the question to the dr. regarding b cells or t cells. What other questions should I ask????

Dell has been doing quite well for the past few months. Our new regiment is ivig every 3 weeks, solumedrol each week.

Another question, since I have 2 other school age children that can bring home all kinds of yucky things to Dell, if ivig is increased to every 2 weeks while on Rituxan, will that help?

Also, have the ppl. that have taken Rituxan gotten sick with flu/colds easily? Out of all my concerns, sickness and the fact that the first 2 treatments are dangerous are my main concerns. I know those are just minor things, lol.

Thanks for any help ya’ll may be able to give.

Love, Lori

Lori, I’ll answer tomorrow. We are getting ready to go to the Detroit airport, goimg home from family reiunion.

Good news on the completion of the Rituxan treatments, Norb. I just learned today that my anti-mag test came back confirming that I have elevated IgM levels in the blood – 30 times normal. Small wonder the peripheral nerves are taking a beating. So I am booking Rituxan treatments ASAP. They say that there are some openings available here in Toronto in December.
Unfortunately I have been unable to find anyone who will cover the cost…neither the Ontario Ministry of Health nor my insurance company Sun Life. I guess that what is needed is enough success stories to reach a point where the drug is approved as a standard treatment for antiMAG IgM.
That’s the latest from here.
Andrew

[B]Andrew[/B], the good news about the anti-MAG results you received is that Rituxan may actually help. The bad news as we both have found out is that insurance won’t pay for this kind of neuropathy unless there is an underlying disease, non-Hodgkin’s lymphoma. In my case there are no obvious symptoms for the lymphoma and only a bone marrow biopsy provided the evidence. My neurologist already indicated two years ago when the anti-MAG was first found, that there may be an underlying disease of lymphoma. Since the oncologist I saw then could not find any obvious symptoms and was not willing to do the biopsy, I never got the Rituxan then. I’m wondering whether this path might be something for you to pursue.

[B]Lori[/B], according to an immunologist who posted on this forum a couple of years ago, B–cells are not always involved in CIDP. Since Rituxan only removes these cells, it may or may not help for usual CIDP. I hope it helps Dell. The primary task for B–cells is to destroy bacteria, fungi etc. It is not involved in the fight against viruses. For these T cells play the major role. So if Dell catches a cold from his siblings after Rituxan treatment , he still will be able to fight it as he normally would. You need to watch out for bacterial infections like sore throat, ear, unusual sores on his body or in his mouth. My oncologist believed that the IVIG would provide me with extra protection. I received one just before the Rituxan treatment. Since the immunoglobulin has a half-life of four weeks or so and continues to provide protection for some time, I did not receive another one during the Rituxan treatment. My neurologist I saw afterwards decided I should not receive any IVIG for the time being to see if I show any improvement.

Hi Norb
Thank you for the replies you sent to Lori and me.
I have a couple of questions/comments as a result of both replies.
I looked up non-Hodgkin’s lymphoma on the internet and it showed that Rituxan has had encouraging results in the treatment certain types of B-cell lymphoma. That is good news. You make a good point that a bone marrow biopsy should eventually be taken to determine if there is non-Hodgkin’s lymphoma. But for the first Rituxan treatment, I can’t wait any longer because the rate of nerve damage seems to be increasing and I am keen to stop the progression ASAP. I am going to continue lobbying for financial coverage, especially if the treatment is successful. Some day, somehow I believe that coverage will apply.
I found your comments on the B-cell versus T-cell effects to be interesting too. Question: if one were to pick up a bacterial infection while treating B-cell CIDP, would antibiotics still be effective? Clearly one must be more careful washing hands, etc in the first place to avoid bacterial infections, but sooner or later it will probably happen and hopefully it is not something untreatable or serious like pneumonia.
Another question I have been asking myself for a long time is “How did I get this?” I have thought back to the days when I loved the smell of gasoline when my Dad refilled the car, or getting new shoes in the shoestore where they had an xray machine for viewing the foot bones to see if the shoes were too tight. Or the summer job up north where they sprayed a mixture of DDT and deisel fuel each morning to get rid of mosquitoes. Or rubbing mercury into a nickel to make it shiny. Something must have triggered the mutations to start the MGUS. Do you know of any surveys or work that has been done in this area?
Take care
Andrew

Andrew,

I’m so sorry your Rituxan will not be covered. I need my drs. nurse to start the process of calling the insurance co. in case we do decide to do this. We are not totally convinced yet.

Do you have private insurance?

After Dell got this disease, it made me realize how wonderful insurance is. Poor children in Mississippi get medicaide but the your state and only the neighboring states take it. When we went to John Hopkins for a 2nd opinion on treatment, they would not take the medicaide. Although we have private insurance, we have that too since Dell is disabled.

In our state, and all states are different, you could make a million dollars a year but if you have a disabled child, you still qualify. They pay for everything the insurance does not and we NEVER get a bill for anything. They are even paying for his diapers. At least bills is something we don’t have to worry about with his disease because I have lots to worry about without them.

Lori

Like I have said in other posts. I have the chronic progressive form of cidp, with no elevated protien levels or other abnormalities in blood or spinal fluid.

Medicare recently decided to pay for my Rituxan citing the drug has been found helpful in cidp. I am assuming the other insurance companies will follow suit, but it may take some fighting and time.

[B]John,[/B] if I remember correctly what has been posted before, Medicare in some regions refused to pay for Rituxan. It seemed that not all are on the same page.

[B]Andrew[/B], antibiotics should work independently of B–cell levels. I have no idea how severe a bacterial infection can become if the primary defense provided by our immune system is missing.

I don’t think there is any clear link identifying a cause for lymphoma. However, if you google lymphoma and toxins you come up with a number of hits. “A study published in last week’s American Journal of Epidemiology reveals a link between hair dye and lymphoma risk.” This is one of them. Between the ages of 14 and 25 I was exposed to toxic fumes from my father’s leather work. I don’t see how it could be the cause for the lymphoma 50 years later. But then again it could have been low grade for many many years.

Could be Norb, I know they finally began after 2 years of appeals. You would think the cost of rituxan being much less than ivig would sway some suit into trying to save the taxpayers some money, but that would make sense.

Allaug,

That was funny. He’s probably scared you are learning more than he already knows, lol.

Yesterday, I spoke to Dell’s immunologist/allergist and he explained more about Rituxan. He said the B cells regenerate at a very fast pace and he would hope that if Dell did get sick, he “thinks” he would be able to fight it off.

He recommended getting a CAT scan before the Rituxan is started, to mke sure there are no hidden infections that will go crazy once the B cells are killed off. Dell has been fighting colds for about a month now. He just can’t seem to get rid of it, even though he’s on ivig.

If you have anything to add to my understanding of Rituxan before we meet with the neuro next Thursday, pls post something. I am leaning more towards it but still am very scared.

Love, Lori

Allaug.[QUOTE]A few weeks back I saw my neurologist (just down the corridor from where I was yesterday) at the same hospital. It had happened before that he refused to listen to me concerning the diagnose the hematologist and I agree upon. The same thing happened this time. When I mentioned it he said rather dismissively “It’s not in your medical journals!”. I tried to explain how we had reached this diagnosis, but he repeated that it was not in my journal. Yesterday I got the chance to see what HE had written in my journal and here is what it said (from memory, and a bit falteringly translated into English): “She (I) had been reading quite extencively and had a lot to say about B-cells and T-cells.” Full stop and finish! I’m not quite sure if he is sarcastic here, or just plain ignorant; perhaps the former to mask the latter. No wonder he never sends me a transcript of my journal after my visits with him, something that my hematologist always do. [/QUOTE]

I think that the problem may be that even a neurologist or whatever consultant can get to be out of their depth. For many of them both CIDP and our PDN are something entirely new. In our area of West Yorkshire with a rather large population there is only one neurolgist who has a very special interest in and is an expert in CIDP and PDN. Other neurologists must/should contact him for advice/support, if they are wise. After all the inflammatory, demyelinating neuropathies are very rare.

I have been in hospital recently, partly because I had been getting excessive neuropathic pain and along with another problem had become worn out. I tell this to illustrate the point about rarity even for a neurologist. A charge nurse (male = of sister) told me a junior doctor had gone to the trouble of checking on my PDN and discovered it as being 1 in 6 million. About right I believe.

The wise consultant who meets something new seeks advice from someone else. The unwise is dismissive and does not get the help that the patient needs.

Oh, a consultant (for the geriatrics that includes me) did work out a probable explanation for my extra nerve pain. That’s another story.:rolleyes:

[QUOTE=Dells mom]
Yesterday, I spoke to Dell’s immunologist/allergist and he explained more about Rituxan. He said the B cells regenerate at a very fast pace and he would hope that if Dell did get sick, he “thinks” he would be able to fight it off.[/QUOTE]
Lori, I’ve read in several places that it does take quite some time for B-cell levels to return to normal.

Here is one of them:
[url]http://www.lymphomation.org/rituxan.htm[/url]

[QUOTE]How long does it take normal b-cells to recover?
Rituxan kills both normal and malignant b-cells that express CD20. Precursor cells from which new b-cells are generated do not express CD20 and are not affected. B-cell recovery begins at approximately six months following completion of treatment, and median B-cell levels return to normal by 12 months.[/QUOTE]

They do not explain why that is. I suspect it has to do with the half-life of antibodies. After four weeks there still should be one half of the Rituxan antibodies in circulation killing B-cells. After four more weeks it would be one fourth etc.

Bottom line, in my opinion it would be wise to watch out for infections for several months after treatment.

Norb,

I posted a new post on the main forum about Rituxan. Look at if you can.

Thanks for the info on the infections.
Lori

Norb, Allaug, Dell’s Mom, JohnC, kenspdn, and everyone else on this Forum…
Thank you!! The knowledge which one can gain from reading the postings on this forum goes far beyond what most doctor’s, drug companies, insurance companies, etc. are willing to share. I have learned a lot in the short time since joining and am extremely appreciative.
Unfortunately I don’t have much to add to the common knowledge right now, but am happy to report that I will get my first infusion this Friday at 8:30 am. WAHOO!!! Next three are one per week finishing up on Dec 27th.
Coverage: my corporate health and dental care plan administrators (part of the corporate benefit package) have indicated that they do not cover drugs which are normally administered in a hospital! What a joke! My benefits administrator is appealing to them on the basis of this being a “drug of exception”. (knowing the cost, I doubt that she will have much success).
Still no reply from the Ministry of Health. Bureaucracy at it’s best!
At least it is deductible from income taxes (here in Canada where we are overtaxed to begin with) and the drug company has given a discount under their patient assistance program.
Never mind…if it works…then it is worth every penny to me.
I am off to rejoin the YMCA this afternoon so that I can get some cardiovascular exercise at the same time as the treatments. The physiatrist at TGH has also prescribed a balance clinic to help improve my balance. I feel that the three (Rituxan, YMCA and balance clinic) should provide a good combination toward recovery.
I’m not going to sign up for the Boston Marathon yet (ha ha), but I’m really optimistic about the Rituxan, even more so after reading Norb’s posting about half-life and effectiveness.
Andrew
PS. New sensations in the last few weeks: pushed both gas and brake pedal at the same time in a rental car two weeks ago – no damage; dropping things a lot these days including my blood test request form that blew all over the parking lot before I could finally grab it; have now quit curling because it is getting a bit dangerous.

Andrew,

Please let us know how things go. I’m excited for you.

Tomorrow we go to the neuro. for our regular 3 month appt. and to talk about the Rituxan. I have some questions written down. My husband will come to the appt. too, it’s too hard to explain things to him if he’s not there. He always asks the questions that I did not ask, lol.

Lori

Hi Lori
When you get this, you will have probably already had your family appointment with the neuro. I hope it went well.
One question you may have asked, and this also goes back to a post by Norb on page 9, is how many Rituxan treatment sessions one can take. Norb mentioned 4 infusions per month, every 6 months, for two years…so that is 4sessions total (16 infusions). I also saw something to that effect in the literature published by Rituxan on one of the links suggested by Norb.
Does anyone know if there is a limit? Could one conceivably take it for the rest of one’s life? Otherwise, after the last session, I would think that the same old B-cells would start to build up again as usual resulting in the IgM concentration growth (and peripheral nerve damage again in some cases).
Take care
Andrew

As far as I know I will be taking it the rest of my life if I can afford it.

[QUOTE=JohnC]As far as I know I will be taking it the rest of my life if I can afford it.[/QUOTE]

Let’s hope it costs a LOT (as a function of the years you have to take it)!!
Surely the cost will come down when a generic equivalent becomes available someday, or the patent runs out and there is more competition.

[QUOTE=Andrew]Surely the cost will come down when a generic equivalent becomes available someday, or the patent runs out and there is more competition.[/QUOTE]

I’m afraid that’s never going to happen. Rituxan is not a chemical that can be duplicated by other companies at lower cost. It’s an engineered antibody and the process to make it is very complicated.

As far as taking it for life is concerned, there’s always the hope that the B-cell (cells) producing the auto antibody is a rogue one and we’ll be eliminated by the Rituxan for good. But regardless, it’s considerably cheaper than getting IVIG on a monthly basis and also makes it less likely to run out of good veins.

[QUOTE=Allaug]Norb –
Thanks for enlighten me\us on the half-life of Rituxan antibodies[/QUOTE]
Allaug, I need to add one caveat. I don’t know if and to what extent our immune system tries to eliminate the Rituxan. After all it is half foreign. I’m not sure if it is possible for our antibodies to attach to other antibodies and mark them for destruction. If this was possible it would, of course, reduce the half-life I mentioned.

It is known that our immune system produces millions and millions of B-cell’s each one with a different shape of antibody matching a different antigen including compounds that don’t even exist in nature. Rituxan is one such compound.

Norb,

You sound like you need to get your degree in B-Cell production or something like that, lol.

Andrew,

We had the appt today and we did talk about maintenance. He said he’s never had a child on a maintenance dose but I don’t know how long he’s been using the Rituxan.

Some questions and comments we talked about:

He has had a child younger than Dell (3-1/2 years old) on Rituxan.

He had one child, I can’t remember the disease, it starts with an M, he said he is doing “remarkably well.”

No one has had a bad side effect yet and no one has gotten real sick with cold, flu, etc.

We talked about if we should go on it when the summer starts because of the other 2 children bringing stuff home to Dell. If summer was a couple of months away, it would be great but I don’t want to wait 6 months to start.

We asked if any of his other CIDP patients (I know of 2 others with CIDP) has gotten on Rituxan. He said all of the others are doing good and don’t need the drug. He said Dell is doing good but not where he wants him.

We asked a question that he did not know the answer and I appreciate that he tells us he doesn’t know. Since he’s on solumedrol each week and that is bringing his immune system down, should we come down from the steriods.

Has anyone talked to their dr. about that? If Rituxan is destroying your B-Cells and your immune system could be in trouble if you get sick, should you start tapering off of the steriods before you start the Rituxan treatment?

Something he said that was very interesting. He said not to let Dell play in the mud, garden, plant anything. He said cats could urinate and poop on the bushes and ground and that would not be good for Dell. So…….if any of you clean a litter box, you need to speak with your drs. about this.

Thanks,
Lori

Back from my first infusion today. The nurse was super and there was one other patient in the room also getting a Rituxan infusion so we could compare notes and have a few good laughs.
All went extremely well although I feel a bit zonked right now…tired and lethargic. I had a slight allergic reaction about 1/2 hour into the infusion and started sneezing with runny nose – but the nurse cut back the pace a bit and the allergy cleared up and the rest was fine. She monitored temperature and blood pressure regularly.
Next infusion is Thursday. Watch out B-cells! The Rituxan mercenary is coming to do battle!!
Have a good weekend
Andrew

[QUOTE=Dells mom]Something he said that was very interesting. He said not to let Dell play in the mud, garden, plant anything. He said cats could urinate and poop on the bushes and ground and that would not be good for Dell. [/QUOTE]
that makes a lot of sense. These places are full of bacteria.

Looks like my immune system is still able to handle viruses as I expected. I’m just getting over a cold with a runny nose. There was nothing unusual about it. It was rather mild and took about a week. I probably caught the virus during a family reunion in Michigan over Thanksgiving. There were three children under 10.

I definitely would be concerned about being on steroids the same time he is receiving Rituxan. Ask your doctor about it.

Andrew look at this Canadian website. I don’t understand the lingo but you might. It’s about Rituxan and one area talks about which province covers it or not.
[url]http://www.lymphoma.ca/rituxan.htm[/url]
ON Covered Rituxan is covered according to eligibility criteria by Cancer Care Ontario.
[url]http://profiles.drugcoverage.ca/en/default.asp?DrugID=93[/url]

Sue

Norb,

I’m amazed that you are handling the cold. That is good news.

Dell’s neuro. does not know the answer to the question if he should get off the steriods. I think I will call the immuologist tomorrow and talk with him.

Thanks, Lori

I don’t think it’s that amazing, Lori. Like I said earlier, Rituxan does not interfere with our ability to fight viruses. It’s just the bacteria we have to watch out for.

Some lymphoma patients are getting a combination treatment of Rituxan and chemo. I don’t know about CIDP. I also don’t know if the effects of steroids on the immune system are as severe as standard chemo like cyclophosmamide (cytoxin). And then there’s Dell’s age to be considered also.

I wish I had an answer for you, Lori, but I’m no expert. What did the immunologist say?

I was just about to call the immuologist. I guess if he doesn’t have an answer (if Dell should come off of Solumedrol before Rituxan is started), I will get the 2 doctors talking by email and let them hash it out. If I can’t get anything with the 2 of them, I guess I’ll email Dr. Parry.

Thanks Norb,

Lori

[QUOTE=norb] He said not to let Dell play in the mud, garden, plant anything. He said cats could urinate and poop on the bushes and ground and that would not be good for Dell.
These places are full of bacteria.
.[/QUOTE]

It could actually be worse than that…my nephew was playing rugby and skinned his leg when he fell. Within a few days flesh-eating bacteria had driven his temperature way up and without quick medication, he would have lost his leg or worse. As it was, they had to do surgery and close it with a skin graft. Bottom line is that there can be some dangerous bacteria in the soil.

By the way, and thanks to excellent links provided by Sue, I discovered through progressive links the following about Rituxan…The chimeric anti-CD20 antibody is produced by mammalian cell [B](Chinese Hamster ovary) [/B]suspension culture in a nutrient medium containing the antibiotic gentamicin.

[ATTACH]1101[/ATTACH]

Aren’t they cute?? 😀
Andrew

Hi Allaug
I guess we have the same thing! So far they have not given any indication that I have CIDP or anything else. Only the IgM MGUS, which of course I discovered because of the peripheral neuropathy which is perfectly symmetric and is attacking both feet and hands (hands came after the feet). It is somewhat more sensory than axonal, but nevertheless, there is some weakness from the axonal damage too.
I am interested in determining more about why they prescribed Rituxan treatments for you 28 days apart, whereas I will get the same as Norb got…one infusion every week for 4 weeks, then 6 months off before the next series. Were the 28days apart treatments for maintenance or were they the initial ones?
My second infusion will be on Thursday. Call it the “four infusions of Christmas”, I guess
Kind regards
Andrew

Dell will also get one infusion per week for 4 weeks. The dr. said they could do it over 8 weeks but he’d rather try the 4 weeks.

I spoke with the immunologist today. He is emailing our neuro. I asked if Dell needed to be off solumedrol before Rituxan. His thinking is this: Since Rituxan is given to lymphoma (spelling) ppl and they already have a compromised immune system because of the lymphoma, Dell would in general, be just like them since he’s on solumedrol and it’s bringing his immune system down.

He did speak again that since Dell has been on solumedrol for so long, there could be a lingering infection that is “hidden” and when we kill the b-cells, the infection would go crazy.

Our neuro. said he would do a chest x-ray to make sure there is no lung infection but I could see us, in the end, doing a CAT scan before the Rituxan. We’ll just have to wait and see what the drs. figure out.

He also said it sounded good to him to wait until the cold and flu season was behind us to start, maybe around March. The neuro. stated Dell could not be sick before the Rituxan is started. Also, the immuologist agrees a ivig treatment needs to be given 1 weeks before the Rituxan.

Andrew,

Good luck with your treatment. Hope you have just as good of luck as with the first. Keep us posted.

Lori

[QUOTE=Dells mom]
Good luck with your treatment. Hope you have just as good of luck as with the first.
Lori[/QUOTE]

Thanks Lori
I’ll let you know. I feel really good today…more energy than usual and I don’t know why. When I was running regularly, sometimes it meant that I was going to catch a cold a day or two later. I could never figure out why, except that it must have been some sort of immune reaction thing. Maybe I had MGUS already and the antibodies became otherwise occupied fighting the cold germs instead of attacking me? I really hope that it is the Rituxan that is making me feel better today. We’ll see I guess.

Good luck with deciding on the solumedryl for Dell. I must confess to you that all of that is way over my head so I am unable to even make an educated comment. All I can do is wish him the best.

Take care
Andrew

Allaug, that’s a good explanation of what’s going on with the “B-ill” cells. This is my hope also that the rogue one is gone for good. However, at our age there is a good chance that some bad ones will come back after a while creating monoclonal antibodies. But as long as their receptors don’t match any of our own body molecules there won’t be any problem. Remember what Threads the immunologist posted last year:

[QUOTE]As we get older, it is not that unusual for the odd B cell clone to misfire and fail to die when they reach the terminal IgM stage. They produce moderate amounts of IgM antibody that is low specificity, and as long as the antibody doesn’t stick to anything it is harmless. Apparently in some cases the antibody does react with a myelin component, hence causing the damage that you have unfortunately observed[/QUOTE]

I also understand that this slow growing (indolent) lymphoma which I have, has a tendency to come back after a while. My guess is that this is the reason the oncologist wants to repeat the Rituxan treatment every six months.

I have a question for Norb or Allaug or anyone who knows…since I developed the peripheral neuropathy, I notice that my feet are very dry and so are my fingers. I used to have a certain amount of moisture in my finger tips, but now, quite often if I drop something, it is as much due to dry fingers as it is to lack of feeling. And my feet are certainly much dryer. Is there an interrelationship between nerve cells and the moisture in feet and hands?
Andrew

Andrew, it’s difficult for me to say. I have not noticed anything unusual. On the other hand, the humidity on the front range here in Colorado is so low that most of my skin is pretty dry, especially in winter. I’ve never read anything about a connection between sweat glands and neuropathy.

Well, I did find something on this subject, which makes me think that there is something to it…but not a lot. It’s not really that important…just an observation. I also notice a lot of tinitus these last couple of years, but maybe that is just another nasty side-effect of the aging process. Either that, or too much Led Zeppelin back in the 60’s!! Ha ha.

[B]Manifestations of Peripheral Autonomic Insufficiency in Patients Suffering from Acute Inflammatory Demyelinating Neuropathies [/B]

Abstract We tried to characterize the frequency and significance of manifestations of peripheral autonomic insufficiency (PAI) in clinical cases of [B]acute inflammatory demyelinating neuropathies (AIDN). [/B]Forty patients with the above diagnosis (21 men and 19 women, 16 to 72 years old) were examined. To detect symptoms attributable to PAI, we used Birkmayer–Vein tables; these data were compared with the results of electroneuromyographic (ENMG) examinations. In 38 and 2 cases, clinical manifestations of AIDN corresponded to the Guillain–Barre and Miller–Fisher syndromes, respectively. According to ENMG data, changes in the peripheral nerves and neuromuscular junctions corresponded to axonopathy, myelinopathy, and a mixed damage (myelinoaxonopathy) in 18 (45%), 14 (35%), and 8 (20%) patients, respectively. The following disturbances in the sphere of autonomic control were observed: orthostatic hypotension, in 28 cases (70%); tachycardia in the resting state, in 24 cases (60%); hypertension in the reclining position, in 16 cases (40%); [B]hypohydrosis of the skin on the limbs, in 18 cases (45%); [/B]dyspepsia, in 8 cases (20%), and enuresis, in 3 cases (7.5%). Manifestations of PAI began to be observed in the earliest stage of the disease and were preserved within the period of recovery of the motor functions; they were more intensive in the cases of a severe clinical course of polyneuropathies. The severity of autonomic disorders strictly correlated with the level of axonal degeneration (characterized according to the ENMG data). The treatment used (i.v. injections of immunoglobulin, plasmapheresis, use of vasoactive and neurometabolic drugs) not only improved the state of the motor sphere but also decreased the intensity of PAI symptoms. Thus, in the cases of AIDN not only thick myelinated fibers of the peripheral nerves but also a significant proportion of thin fibers responsible for the control of automatic functions are subjected to damage. PAI is rather frequently observed in patients suffering from AIDN, and the level of its manifestation reflects the severity of the disease and intensity of damage to the peripheral nerves.

Regards
Andrew

Reporting back on the Rituxan treatments…I had the second treatment of four yesterday. The Rituxan was mixed as a double dilution so that they had to speed up the pump feed rate (and let me go to the bathroom in the middle). It took 7 hours, so absolutely no side effects. However, when I got home it was the same as last week. My feet felt swollen and I felt a bit groggy, and got a lousy sleep, reading most of the night. Now I’m waiting for the second or third day after infusion to see if I get the big energy boost same as after the first infusion. I guess everyone is different, but maybe it is nevertheless useful to post the experiences.
Have a good weekend
Andrew

Andrew,

I would like for you to continue to post how you are feeling after a treatment. It helps to know, maybe Dell will feel the same way.

After an ivig treatment, we carry on as usual but I know with the Rituxan, he’ll probably lay around a watch more tv. He loves it way too much but it’s my fault. When you’ve had a sick child, tv entertains them and keeps them quiet.

Love, Lori

Hi Lori
That is very encouraging. Thank you. I felt a bit foolish writing that last post because it was all about me and my experience, whereas lots of others have had Rituxan. But knowing that it can be helpful to you and Dell, I’ll gladly report back on each of the treatments.
I just went out and did some Xmas shopping and I’m feeling better now. Maybe to the Y tomorrow for some cardiovascular on the elliptic trainer.
Also, nothing wrong with TV as long as it isn’t soap operas!!! Ha ha.
I’m sure Dell has learned a lot from TV.
Have a good weekend. We have a snowstorm coming on Sunday with a foot of snow expected. I’ll need to save some energy for shoveling on Sunday. For sure it will be a white Christmas here.
Take care
Andrew

Here is something that may be of interest to all you “anti-MAG IgM people”, namely Allaug and Andrew. It is from a book that unfortunately costs $200:[I][B] Immunological and Infectious Diseases of the Peripheral Nerves By Norman Latov et al[/B][/I]. it has interesting chapters on MGUS and antiMAG. I copied one of the paragraphs that was especially of interest. According to it B-cell capable of producing antiMAG antibodies are already present at birth. T cells could possibly play a role when a B-cell clone gets out of control. This would raise the question of a possible infection as the trigger.

You can look at the pages at:

[url]http://books.google.com/books?id=KUQcqhYBipUC&pg=PA178&lpg=PA178&dq=antimag+igm&source=web&ots=Yox3fETloa&sig=-m4L8z4u0sDmUycbA_j8-suUQfg[/url]

[IMG]http://www.ourbluemarble.us/forum/antiMAG%20Pathology.jpg[/IMG]

[QUOTE=norb]Here is something that may be of interest to all you “anti-MAG IgM people”, namely Allaug and Andrew. [/QUOTE]

Hi Norb
You struck gold!! That is really interesting stuff, but in many places “over my head”. I have to really study it tomorrow to get a better understanding.
Thanks for finding it.
Regards
Andrew

New member ( been reading posts for couple of months now)- trying to absorb all of the info here- particularly related to Rituxan. I was diagnosed in July 2007 with CIDP and have been thru two rounds of IVIG ( 5 consecutive days each ) and 4 Plasma Exchanges in 2 week period with NO sign of improvement. Been on prednisone since July various dosages and started Imuran about 3 weeks ago. Neurologist noted last summer that I had elevated IGM level and said that may be why I was not responding too well. Feet numbness and pain gets worse by the week. – Anyways to RITUXAN- Late in October he tried to get me approved for Rituxan on recomendation of a consultion Neurologist,but my Ins. Co. Rejected- as noted in threads- they are looking for CANCER to be involved to use the Rituxan not approved for CIDP. After rejection Dr. said that he was thinking maybe we should wait to pursue Rituxan with the Ins. Co. as he felt it might be TOO agressive a treatment with TOO much risk and we should continue more conventional treatments for now- this is when I went on Imuran and he increased Prednisone dose.- At this point I THINK the ” risk ” would be well worth it. Becoming concerned that when I get better MAY not get back the feeling in feet! My take on most of posts is that if you can get the Rituxan – take it – am I reading this right? ( I see another specialist in Boston in early Jan.- and guess my Dr. will want to have his opinion before we make changes but I am beginning to feel that I MUST become more agressive in treatments to be taken ) – SORRY this post was sooooo long- i should have started posting sooner !

Jim M
Wilbraham, MA

Thanks
So much info to try to soak in! – I was seen by Hemotologist after the elevated IGM level and he ruled out Cancer- When I saw references in threads about Norb and the lymphoma i misread, or assumed there was a Cancer involved- did not realize that the lymphoma could be non-malignant. Will definately check this out when I see my Dr. next week.
Thanks again
Jim M

Welcome JimM to the club. I am also fairly new here but the support and information provided by fellow forum members has been incredible. There are some really knowledgeable people here, like Allaug and Norb.
I am taking Rituxan right now, and like you, could not get coverage for it – neither from the Ontario (Canada) health care system, nor from extended coverage with my employer. I’ve heard different excuses like “it is still experimental in the treatment of MGUS” and “coverage does not apply to any medication which must be given in a hospital (or clinic I guess)”. So I have been calling it the “4 infusions of Christmas” because it will have to be my Christmas present from the family this year!!
I am still learning, but I understand that you need to be careful about some medications because if there is any misdiagnosis, the medications could be more detrimental than helpful. If I understand it correctly, IVIG can target T-cells, which otherwise have been postulated to have a controlling effect on the B-cells. Therefore, suppression of the T-cells will allow B-cells to flourish resulting in increased IgM levels and further neuropathy. I hope I have that correct.
I am hearing lots of good things about Rituxan, also used for Rheumatoid arthritis and other diseases. So my fingers are crossed. Allaug and I seem to have the same thing – IgM MGUS (PDN).
Keep posting because, like I said, there is a wealth of knowledge here in this forum.
Gotta go back out and shovel again. We’re in the middle of a snow storm!
Andrew

PS. Was at a family Xmas party last night and heard that there is a possible link between non-Hodgkins lymphoma, MM, WG, MGUS, etc and a monkey virus SV40 that was accidentally introduced in polio vaccines from about 1955to 1963. That would correspond with the timing that I received my polio vaccine. I checked this morning and I’m not growing a tail or anything, but this could be one possible source of the growing incidence of NHL.

As someone with the IgA variant of PDN/MGUS neuropathy all this is shooting over my head!
I do not have a clue about the B cell involvement in mine.
As an aside, when I was in our local hospital for a week at the end of October, a junior doctor who had looked at my notes apparently checked out PDN on the net and in textbooks and came up with a figure of 1:6million. So she told a charge nurse. What he did not know was whether she meant incidence or prevalence.
I was in hospital having become worn out by pain and another problem. The pain, solely in my feet, is more than neuropathic pain though. Seems akin to the problems of arthritic/rheumatoid sufferers. I reckon that over the 14+ years of the neuropathy the working parts of my feet have become worn.

So Norb and Allaug if your B cell and T cell research throws light on the other than your anti-MAG IgM PDNs then I will be interested.

Ken
In the book that Norb mentioned “Immunological and Infectious Diseases of the Peripheral Nerves” by Latov, Wokke and Kelly, there is a section titled “Polyneuropathies associated with myeloma, POEMS, and non-malignant IgG and IgA monoclonal gammopathies” page 225. I tried to look at the book review but those pages are blanked out. Maybe if someone has a copy they can advise you on the content of that section.
Andrew

Ken, the section on IgA/IgG MGUS is very small. I’ve found a way to get to it.

[IMG]http://www.ourbluemarble.us/forum/MGUS.jpg[/IMG]

[QUOTE=Andrew]You mention also that you are now diagnosed with CIDP. I am confused about the CIDP relationship because I was thinking that MGUS was a form of CIDP[/QUOTE]
it is a bit confusing. Some scientists consider MGUS and anti-MAG neuropathy a variant of CIDP, others prefer to treat everything as a separate category. Some even came up with a new name for the same thing: PDN (paraproteinaemic demyelinating neuropathy). My neurologist’s comment was that there are some who want to have their own niche. She didn’t. So she simply diagnosed me with “[B][U]CIDP [/U][/B]with anti-MAG IgM, possibly MGUS” . No matter what they call it, all these variants are [U]chronic[/U], [U]inflammatory[/U], [U]demyelinating [/U]and are a [U]polyneuropathy[/U], which is what CIDP stands for.

It’s been six weeks now since I’ve completed my last Rituxan treatment. I have not noticed any change yet except the numbness in my tongue seems to be less concentrated in one place, more diffuse, not as severe. But I don’t expect any improvement for quite some time. Even if the Rituxan successfully eliminated the aberrant B-cell producing damaging antibodies, there still could be anywhere between 20 and 40% of the original anti-MAG antibodies in circulation attacking the myelin. We just have to be patient.

Considering different people may react differently, here are excerpts from two case studies with opposite outcomes. The first one a 72 year old man:

[QUOTE]Treated with rituximab (375 mg/m2 for 4 weeks), the patient presented at follow-up (3, 6, 8 and 11 months later) a progressive improvement, more evident starting from 6 months after therapy. Eventually, he was able to walk unassisted for a short distance. He regained full functionality at upper limbs and was able to perform his daily activities (shaving, washing, eating) independently. The IgM/k protein significantly decreased (total IgM 1.3 g/l). Electrophysiological studies improved, but only 8 months after therapy mild signs of reinnervation appeared. At month 13, the haematological parameters persisted stable, with no need of maintenance therapy. The dramatic improvement after rituximab administration seems to support a role of B cells in the pathogenesis of CIDP, at least in cases associated with IgM lymphoproliferative diseases, regardless of the presence of antibodies to peripheral nerve antigens. Source: “Rituximab-Responsive CIDP”. C. Briania et al, Departments of Neurosciences and Clinical Immunology, University of Padova, Padua; Italy, 9 February 2004) [/QUOTE]

And here excerpts of the other case, a 73 year old woman:

[QUOTE]Rituximab was started in a dosage of 375 mg/m2 once weekly for 4 weeks. At the end of the treatment, anti-MAG antibodies titer was unchanged, whereas … IgM titer… decreased. At 1-month follow-up, clinical picture and disability had markedly worsened. The patient became wheelchair-bound because of ataxia, strength of distal muscles in the limbs worsened… Clinical picture was unchanged at 6- and 9-month follow-up…
Despite complete inhibition of CD20+ cells and decrease in IgM level, anti-MAG titer remained unchanged. This might imply that pathogenic antibodies were produced either by CD20+ cells at maturative stages (plasma cells – Norb) when rituximab is ineffective or by different B-cell subpopulations. As rituximab may induce a worsening of the clinical picture in some patients, further studies addressing the features of potential responders are warranted before larger clinical trials in anti-MAG. Source: Broglia et al. “Worsening after Rituximab in antiMAG Neuropathy”. Muscle & Nerve, Volume 32, Issue 3, Pages 378-379 [/QUOTE]

Norb,

I’d say that’s good news about your tongue. You know your own body.

I hope you and your family have a great Christmas. It’s 59 degrees here, at 5:00 p.m. but should be cold weather for Christmas. I don’t like having a warm Christmas.

Lori

Norb
Brilliant! Finally someone has cleared up this confusion I had of MGUS vs CIDP and a lot of other names. I even feel like more of a member to the CIDP club now that I know that I have it too!

Also, thanks for the two case studies on effectiveness of Rituxan.

I had my third infusion of Christmas yesterday and all went well in the clinic. It was a carbon copy of the other two, after I left the clinic. I felt very sluggish and wacked out. So I went to bed early and slept well for about two hours. Then tossed and turned for the next 4 hours and finally got up at 4:45 am. I don’t know why it does that to me. I even took a Gravol in the middle of the night but it had no effect. My feet felt very heavy and I had the stocking and glove syndrome, but I believe that is just a bit of an allergic reaction which customarily goes away the next day (or subsides to its normal level I should say).

Have a good weekend and not too much dancing. You might step on someone’s toes and not even know it!! (Joking)
Merry Christmas all
Andrew

To be accurate, MGUS can be an exception. One may have MGUS without obvious symptoms, usually discovered through a blood test. In that case a “sick” plasma cell won’t quit producing identical antibodies that are harmless. In our case MGUS results in antiMAG IgM antibodies doing the damage we experience. Only then can it be considered a CIDP variant. This is my understanding of it.

MGUS can be a [U]symptom[/U] of or be [U]related to [/U]underlying diseases including lymphoma and myeloma. It says in the literature that it may [U]develop[/U] into these but I think my way of describing the relationship is more accurate. Lymphoma and myeloma in their advanced stages show more serious symptoms including repeated coughs; colds and other infections; unexplained bruising or bleeding; swollen lymph glands; pain; night sweats; and weight loss. Fortunately, The B-cell lymphoma I have apparently got caught at a very early stage.

Andrew, your reaction to the Rituxan isn’t that unusual. After all, it is a foreign protein your immune system obviously is trying to fight. I don’t have a clue why I didn’t react as strongly as you did. Maybe your immune system is more vigilant than mine.

To be accurate, MGUS can be an exception. One may have MGUS without obvious symptoms, usually discovered through a blood test. In that case a “sick” plasma cell won’t quit producing identical antibodies that are harmless. In our case MGUS results in antiMAG IgM antibodies doing the damage we experience. Only then can it be considered a CIDP variant. This is my understanding of it.

MGUS can be a [U]symptom[/U] of or be [U]related[/U] to underlying diseases including lymphoma and myeloma. It says in the literature that it may [U]develop [/U]into these but I think my way of describing the relationship is more accurate. Lymphoma and myeloma in their advanced stages show more serious symptoms including repeated coughs; colds and other infections; unexplained bruising or bleeding; swollen lymph glands; pain; night sweats; and weight loss. Fortunately, The B-cell lymphoma I have apparently got caught at a very early stage.

[B]Andrew[/B], your reaction to the Rituxan isn’t that unusual. After all, it is a foreign protein your immune system obviously is trying to fight. I don’t have a clue why I didn’t react as strongly as you did. Maybe your immune system is more vigilant than mine. 😮

Happy holidays, better get some leather gloves that aren’t quite that tight. I looked at the CIDP store in NeverNeverLand but they were all out. Have to put up with them a while longer until the Rituxan finally kicks in.

[QUOTE=norb] I don’t have a clue why I didn’t react as strongly as you did. Maybe your immune system is more vigilant than mine. 😮 [/QUOTE]

Hi Norb
I figured out the insomnia thing. I was looking up the description of Solumedrol, which they pump into me for a half hour before the Rituxan. It says:

[FONT=”Century Gothic”][B]Possible Side Effects[/B]
Side effects that may go away as your body adjusts to the medication and do not require medical attention unless they continue or are bothersome: increased appetite; indigestion; [B]nervousness or restlessness; trouble sleeping; headache[/B]; increased sweating; [B]unusual increase in hair growth on body or face.[/B][/FONT]

I better go shave again too. The werewolf is back. Hey, maybe my bald head will get some needed new growth. Positive side effects!
Cheers

Update on treatments: I had the fourth infusion on Thursday and everything went well. I had the usual side effects of sleeplessness but evidently due to the Solumedrol and not the Rituxan.
Now comes the waiting period to see if it will work.
I found a slide show on the internet titled “An update on the diagnosis and treatment of dysimmune polyneuropathies” which mentions Rituxan treatment and results at: [COLOR=”Blue”]http://www.institut-myologie.org/e_upload/ppt/LEGER-05-r-a.pps#315,1,An update on the diagnosis and treatment of dysimmune polyneuropathies[/COLOR]
Maybe you have already seen this before, but it does also mention the time factor for reduction of B-Lymphoctytes in slide 58 as “from first month up to 6 – 9 months”.
Norb, your news about an improvement in the numbness in your tongue is encouraging. I’ll report back if and when I see any changes to my feet or hands.
Have a happy, safe and HEALTHY New Year
Andrew

From postings by Norb and Andrew appears that there are [U]no significant [/U]side effects from the Rituxan treatment ( Are you keeping anything from us?:) ). My neurologist has been hesistant as he feels it may be TOO aggressive at this point. Got to admit when he referred to it as a ” Chemo ” drug it did scare me- but I am getting desperate. Good to hear no hair falling out or constant nausea. He has me scheduled to see a Dr Gorson ( CIDP expert in this MA ) in Boston next week and agreed that if Gorson recommended and we could get Ins. Co. approval we would go ahead with Rituxan. I hope I am still walking by then! It seems to me that Rituxan is becoming pretty widely accepted in CIDP world- as noted in these forums and on other Web Sites. Do our Doctors and Insurance Companies ever come here- I am new to forums but it seems many of you have more information than our doctors!
Jim

[B]Jim[/B], don’t worry. We are not hiding anything. I don’t understand why doctors insist on calling it chemo. Chemo is a [U]chemical[/U] compound attacking cancer cells [U]anywhere[/U] in the body. Rituxan is a [U]biological [/U]agent only affecting B-cells [U]within[/U] the immune system and nothing else.

Now two months later it doesn’t seem like there has been any treatment at all. As a matter of fact, it appears as if my symptoms continue to get worse. The numbness in my tongue did change some time ago but it is still there. As time goes on it is becoming ever more difficult to maintain a hopeful attitude. I have to keep reminding myself of the case studies where recovery takes a very long time.

[B]Andrew[/B], thanks so much for posting the link to the PowerPoint presentation. Interesting statistics not that I was able to retain much of it. What did stand out was that only four out of seven patients on Rituxan showed improvements, not exactly encouraging. Interesting was the breakdown of CIDP patients by gender, always more men than women, most extreme in Norway and Italy with three times more men than women. [B]Allaug[/B], it’s clear you are an exceptional person 😀

Wishing all of you the best for the new year.

Norb
Thank you for posting including the update on your status. I have to say that my symptoms have got worse too in the last few weeks but it is only 4 weeks now since my first infusion. I have therefore been thinking so far that it is too early and that the full quantity (fourth infusion) of Rituxan has only been in my system for a week now. I sure hope that your symptoms stabilize and start to improve soon, Norb. All of the underlying theory suggests that the elimination of the Beta Lymphocytes will stop production of the IgM. I wonder if the time lag is not only due to the slow elimination of B cells, but also if there is a time lag while some of the IgM has already bound to the MAG protein in our nerve myelin, but not yet actually killed it. That, together with the IgM still running around in the blood stream, plus new IgM being produced by B cells not yet targeted by the Rituxan would perhaps explain the continued deterioration for a while until the overall balance switches in favour of normal B cell functionality. Maybe even after our blood results show low levels of IgM, there will still be some lag. Who knows.
This is some roller coaster ride, Norb, but we gotta stay positive. I am clinging to the results of those 4 out of 7 as my hope for the future. If they told me I need to spend another $16,000 tomorrow for 4 more infusions starting next week, I’d pay!!
We can beat it!!
Andrew

[QUOTE=Andrew]. I wonder if the time lag is not only due to the slow elimination of B cells, but also if there is a time lag while some of the IgM has already bound to the MAG protein in our nerve myelin, but not yet actually killed it. [/QUOTE]
That makes a lot of sense. The anti-MAG antibodies are not the ones doing the damage. They simply mark the spot for the complement system to come in and finish the job. When activated, the complement system, a group of enzymes, releases cytokines. Cytokines are molecules involved in inflammation causing phagocytes to destroy the myelin. Here is a graph showing part of the process as it applies to CIDP. In our case there is an additional level that might increase the delay. Myelin is not attacked directly as shown here but MAG which in turn results in myelin damage.

Thanks for the words of encouragement. I needed that,

[IMG]http://www.ourbluemarble.us/forum/antibodies.jpg[/IMG]

Norb, you wrote: “Interesting was the breakdown of CIDP patients by gender, always more men than women, most extreme in Norway and Italy with three times more men than women. Allaug, it’s clear you are an exceptional person.”

Well Norb I think that we have known that for some time?

I feel out of place on this thread though being one of these rare ones with IgA PDN. The literature usually says that there are too few cases – about 10% of all PDNs – for anything conclusive to be written! I could tell them that some of us get a lot of pain however. 😡

Although there has not been any change in my symptoms since I last posted, this may, however, be a good sign. Today, at the oncology’s office I received copies of my last blood tests. It appears that the M antibodies have decreased significantly during the first three weeks of receiving Rituxan. Of course, I have no idea if this also includes the bad ones.

Here are the numbers:

September 9: 525
November 5:473

This is a 10% reduction. Normal range is 60-300 MG/DL.

Some of this may be the IVIG getting flushed out of my system. IgG was reduced by 50% during the same time period. Antibodies in serum consists of about 80% IgG and around 8% IgM.

I don’t know how to interpret all these numbers but I just hope that it is something positive. I had blood drawn again today and should get the results in about a week. I hope that the IgM will be down even more.

Hello to everyone,

Norb, that is great about your bloodwork.

I just emailed the dr. that we are going ahead with the Rituxan in March. We want the cold/flu season as much out of the way as possible.

Dell has 99.5 elevated temp tonight and had the same 13 days ago. I’m sure it’s his disease kicking in.

The immunologist told me on the phone yesterday that he emailed the neuro. and they both decided he did not have to go off the solumedrol before the Rituxan.

Please let me know if there is anything else we need to know before we dive into Rituxan with our 3 year old. I wish he could decide what medications he got, I hate making this decision but I guess that’s why God made me his mom.

Love to all,
Lori

[QUOTE=norb]Here are the numbers:

September 9: 525
November 5:473

This is a 10% reduction. Normal range is 60-300 MG/DL.

[/QUOTE]

Hi Norb
congrats on the improvements. Sounds like you are making progress and I’m happy for you.
I am at the stage you were at a few weeks ago. Seems like it is getting worse instead of better (symptomwise). I am in France right now and had to walk home from the subway tonight and I felt like Lurch on TV. My feet were clumsy and numb and people were passing me on both sides as I struggled along trying to go as fast as I could. But each step made a big clunking noise and if I had paint on the soles of my shoes, it sure would not have been a straight line.
I am a bit concerned after reading your numbers above. My test results from earlier in May showed 3.11 and 3.73 g/L (equiv to 311 and 373 MG/DL). These numbers are not really far out of the normal range so I really question how they came up with the IgM MGUS determination. The only thing which is clear is that they found anti-MAG IgM in the subsequent testing. I guess the best thing to do is to find out the results of my blood test from last week to see what the levels of IgM are.
It sure is easy to have second doubts about things in this game.
Au revoir from Lyon
Andrew

[QUOTE=Allaug]When I went back to check my condition four months later, my IgM level had gone down to 1.3, and I have had my blood sampled every six months after that (since September 2005), and it has been between 1.1 and 1.4 on all occations.

Hang in there guys – don’t give up hope after such “short” time.

Best wishes and fingers crossed (I can do that now:D ) for you both![/QUOTE]

THANK YOU Allaug for your post. That is certainly encouraging. That is one of the super things about this forum…to hear the success stories of others and to regain hope.

We’ll beat this thing!

Thanks again Allaug.
Andrew

Hello:

I have some questions that maybe Norb or Allaug can help with. As background, I was diagnosed with CIDP in 2004, with slowly developing motor and sensory impairment. My diagnosis was adjusted to CIDP Lewis Sumner variant in 2005 due to the asymmetric nature of disability. I have received IVIG on a weekly or bi-weekly basis since 2004, which slows progression, as progression demonstrably speeds up on the occasions treatment was interrupted. In late 2005 I was switched to high dose IV Solumedrol, which triggered a massive exacerbation that left me severely disabled for 8 months, I was returned to IVIG in Mar. 06 and I am still quite disabled but measurably better than before.

My immunoglobulin levels were measured twice. In Aug. ’04 my IGM level was 244. In Sept ’05 my IGM level was 400.

On both occasions an electrophoresis detected no paraprotein or monoclones. I had a second lumbar puncture with isoelectric focusing of the CSF and serum in Mar. 06 which revealed Oligoclonal bands in the CSF, but none in serum. I also had a bone marrow biopsy in Mar. 05 that was reported to me as normal.

As is with Norb, Andrew and Allaug, my pure IGM count is high, and was acknowledged as such by a specialist in his written consultation report – however, no mention of MGUS has ever been noted to me verbally or in any medical record by anyone.

I wonder if IVIG therapy raised my IGM count, thus its coincidental to the treatment?

What do you make of this? I also find it odd that Solumedrol was so devastating, and that IVIG is really only modestly effective – which seems to have parallels to Norb and Allaug’s experience?. Is MGUS something other than just an elevated IGM count?

I have been seen by very top specialists at UCLA, Mayo Clinic and UCI. Th elevated IGM count was discovered and noted by UCI and seen by Mayo doctor, I’m assuming, with as I’ve said NO MENTION OF MGUS or its possible relation to the CIDP.

My main issue is that I am pondering suggesting moving to more powerful treatments beyond IVIG to try to really knock this disease down, and I believe there are clues in my story that might lead to the correct choices, if a doctor can just put the pieces together. I’m 45 years old.

Your thoughts?

Thank you for your note Allaug. As I understand now on further research, one can have an elevated IGM count as a result of an infection of some sort, but I know at the time that my count was taken I had no such infections. However, this does point to the fact that one could have increased IGM levels without monocloned antibodies, in other words a polyclonal increase in IGM.

I think I am going to remind my doctor of this elevated level of IGM (400) from Sept. 05, and ask to have another quantitative immunoglobulin test run. If its still high, or even higher, maybe another electrophoresis to again look for monoclones.

I have read in the medical literature of instances where it took several investigations to uncover monoclonal proteins. My diligence on this is that I believe it might radically alter my current treatment path towards rituxan or stronger chemotherapy drugs, to force a remission.

Billt, I’ll try to add to what Allaug already explained. I still don’t understand it all and I will fill in the blanks with assumptions that make sense to me. There is a huge number of B cells in circulation at all times, each one with a different receptor that can be compared to a lock, each one fitting a different intruder, a different key. Once one or several of them actually encounter an intruder, they get activated and start producing antibodies with lock combinations that fit the keys on the intruder. Apparently, there are always some activated B cells, called plasma cells, producing antibodies. Usually, they die after four to five days. The antibodies in circulation at any given time come from many different B cells, they are polyclonal. A high count of IgM as we experienced does not indicate whether they are all polyclonal or include monoclonal ones coming from one single parent cell. A SPEP (serum protein electrophoresis) test separates the antibodies by type (IgG, IgM etc) and different receptors (locks). A more or less straight line on the graph would indicate that all antibodies are polyclonal. A spike (M spike) indicates monoclonal antibodies also called paraproteins. Here is an illustration:

[IMG]http://myeloma.org/images/content/spike.gif[/IMG]

if the spike is pronounced like here, it could indicate a more serious condition like myeloma, lymphoma etc. if it is very small and other conditions can be excluded, it would be considered MGUS. There still could be the possibility of an underlying condition and a bone marrow biopsy could provide more information. In my case it showed a slow-growing lymphoma. The Rituxan I am receiving will hopefully take care of it and also the resulting neuropathy.

Usually the MGUS antibodies are harmless because their receptors don’t fit anything. Unfortunately, in our case they are M antibodies fitting the MAG component of myelin. There is a special blood test which shows the existence of antiMAG IgM.

Sorry about the long story. I hope I did not confuse things too much or was being redundant.

Here is a table with the results of my blood tests:

[IMG]http://www.ourbluemarble.us/forum/blood_tests.jpg[/IMG]

I’m still waiting for an explanation of the unit of measure from the last lab that did the anti-MAG test.

[QUOTE=Allaug]I forgot to say in my last post that my MGUS was first established after at least three bone-marrow biopsies, and only after a proffessor of hematology had worked on the last biopsy. He was the one who suggested that Rituxan should be tried – together with Fludarabin. He made it clear to me that he had been much more successful in beating diseases caused by monoclonal B-cells when he combined the two medicines.[/QUOTE]
Hi Allaug
I did some research and found a paper at [COLOR=”Blue”]http://bloodjournal.hematologylibrary.org/cgi/reprint/bloodjournal;98/1/41?hits=10&FIRSTINDEX=10&SEARCHID=1&gca=bloodjournal%3B98%2F1%2F41& [/COLOR]which mentions the use of Fludarabin for treatment of WM where there is marrow involvement in the elevated levels of IgM . Maybe that is why, after the three bone marrow biopsies your doctor suggested use of Fludarabin in combination with the Rituxan.
I never had a bone marrow biopsy and am now wondering whether I should ask my doctor for one to determine whether either they should include Fludarabin in my treatment or whether, as in Norb’s case, it is actually NHL along with the MGUS. My next appointment is in late February, so I guess I’ll wait until then to ask.

[QUOTE=Norb]Here is a table with the results of my blood tests.[/QUOTE]
Norb…in your table, you say 4 x 80 mg of Rituxan. I am trying to determine what my dose was and the pharmacy receipt says 80 ML Rituxan vial 10 mg/ml per dose. Would that not be 800 mg? I tried to go back to the Rituxan literature, but it says recommended 375 mg/sq m (I assume body surface area) and it would take a long time with a tape measure and calculator to figure out my body surface area (just joking…they use some conversion based on weight)!
Also, in seeing the Nov-07 antiMAG IgM figure of 15.24, I wonder if that is not just a different unit equivalent to 152400 for comparison with the Sept 05 measurement of 130000?

Have a good weekend.
Andrew

Andrew, the oncologist ordered a bone marrow biopsy based on the results of an immunofixation: “small monoclonal IgM lambda within a polyclonal increase in immunoglobulins.” Apparently, that was sufficient for him to do the biopsy and order Rituxan. It wasn’t based on the elevated IgM. What do you hope to gain from a biopsy?

Now I am confused about the 80 mg. I remember being surprised about the small amount. They mixed it right in the office so I don’t have anything in writing. I will ask them again when I go back next time.

About the anti-MAG test: it says [U]Index[/U] 15.24 which doesn’t tell me anything. I’m still waiting for an answer from the lab. But regardless, this weeks reading will be important. If it is down it would indicate that the Rituxan is working.

I hope you are having a good stay overseas even if you can’t always walk a straight line 😮 . I’d love to go back to France some day, lots of good memories, love the language and culture. My first marriage was in the Ste Madeleine Cathedral – long time ago.

Andrew, you were correct. It was 800mg each week. I looked up e-mail correspondence with a friend in Switzerland who received Rituxan just one day after I did. We are keeping each other up-to-date. Just like me he has not seen any improvements so far.

Thanks for catching my mistake.

[QUOTE=Dells mom]we are going ahead with the Rituxan in March. We want the cold/flu season as much out of the way as possible.[/QUOTE]

Lori, this is a very good idea. When I reported I came down with a cold and got over it pretty quickly, I celebrated too soon. It came back twice since then more a nuisance than serious. I also had cold sores twice something I have not had in years. Now I am having second thoughts about what I thought I knew about B-cells and virus infections.

Take care.

No worries Norb
I liked your table and was constructing one for myself, but I got stuck on that part.
Re bone marrow biopsy, you are probably right. No sense going through that procedure if its not useful or necessary. I guess the most important indicator will be the IgM levels and B cell levels when I next see the doctor.

I googled the Church of Ste. Madeleine and found the Basilica in Vézelay, France. Is that the one you meant? If so, it sure sounds quite impressive.

I’m back in Toronto now, amazed to see all the snow I shoveled is gone and the grass is green. Somehow I doubt that old-man-winter is totally gone yet.

Bon weekend
Andrew

[QUOTE=norb]Lori, this is a very good idea. [/QUOTE]

Lori
I agree with Norb too. Last year in November 2006 I came down with the worst cold I have ever had. To make it worse, I was traveling at the time. I now chalk the severity of that cold up to my whole immune system being out of whack as the B cells were making all the extra IgM. Actually, because of that cold and a subsequent flu shot, the doctors initially thought I had GBS, but after reviewing the history of the neuropathy, it was clear that it had begun prior to the cold or the flu shot.
I have often wondered about the symptoms I was going through for the last couple of years prior to Rituxan. I seemed to get a lot of cankers which were actually cold germs that first manifested themselves in my mouth, before going to the throat and on down into the lungs as a cough. I told the doctors about this sort of first-line-of-defence and they said it was normal as a immune type reaction. But in years gone by, colds always seemed to start in my throat (sore throat) and not in my mouth. For some reason, maybe Rituxan, I haven’t had that problem lately.
While traveling last week there were people coughing all around me on the plane and I even wore a mask on one flight, but so far (touch wood) I have not come down with a cold yet. Maybe my immune system is getting back into balance.
On another note, one thing I noticed in the last couple of years too is tinitus. I asked the doctor about this but he said it didn’t ring a bell with him (sorry for that pun). I tried to do a search to see if there is any connection with CIDP, GBS or MGUS but could not find anything.
Anyway, bottom line after all that verbosity is that I think Dell should take all precautions to avoid colds so that when he does get the Rituxan, he is healthy. Stay warm, avoid crowded areas, and wash hands often. I now carry around a small container of disinfectant (Purell) which I use in airports or public places. I feel like Jack Nicholson in “As good as it gets”.
Good luck to Dell
Andrew

I just had a very weird conversation with a staff member of the neurology department. I had asked for a copy of my last blood test done on Jan 2. I was told that it would cost me $50, so I said “no thanks”. They wanted to know why I wanted it, and I said that it was to track the IgM levels and white blood cell count. Then they said that IgM levels were not part of the blood test. Instead the monthly blood test is being performed to see if it is OK for me to continue to take Rituxan. They said that they are tracking my bone marrow function and liver function to see if I have a reaction to the Rituxan.
I am stumped as to why they are not tracking IgM levels. I thought that was the whole purpose of the expensive exercise.
I have an appointment with the neurologist in early March and will ask again at that time. But maybe in the meantime I should go pay for electrophoresis myself and get a separate blood test done.
This is very confusing. Does anyone have any thoughts on this? It feels as if the patient should be the last person to know anything.
Thanks for your comments.
Andrew

Norb and Andrew,

Norb, thanks for the chart. I think I will print it out and show my neuro. He will be very interested in it, I’m sure.

Andrew,
You are so lucky not to have gotten sick on the planes. Our friend flies from Saudi to Mississppi a few times a year and ALWAYS gets sick. If it were me, I’d have a mask on the entire time.

Dell has been doing great lately, no colds but I will knock on wood too. We are doing the ivig every 3 weeks to keep a hold on the colds. He has had 99.5 twice since Christmas and we know it’s the cidp and not a sickness.

Andrew,
Regarding the bl/w. Instead of paying for the test on your own, can you request your neuro. write an order for it? I would leave a message for him with the nurse and see what he says. If my insurance would pay, it’d go that route first. Good luck,
Lori

[QUOTE=Dells mom]Andrew,
Regarding the bl/w. Instead of paying for the test on your own, can you request your neuro. write an order for it? I would leave a message for him with the nurse and see what he says. [/QUOTE]

Lori
Thanks for the advice. You and my wife Marian must be talking together because she said the same…so I have done exactly that…leaving a message with the receptionist.
We’ll see what happens. In the meantime, they’ve moved my next appointment forward to mid Feb due to conflicts for both the doctor and me. That’s good because I’m preparing a list of questions for her.
Take care
Andrew

Andrew, I think to charge $50 is outrageous and probably a way to discourage patients from getting their records. I have a huge stack of records from different places, never paid a penny, no eyebrows raised, no questions asked.

The blood tests showing types of anti-bodies have been ordered by two different hematologist/oncologists and not by my neurologist. I don’t know what the name of the test is.

I finally received an answer from the lab which was not very informative. All they said was that they are measuring optical density and compare it to a standard solution. They suggested to check with my physician to find out more but I know he has no idea. I’ve used a spectrometer measuring optical density before in a lab so I have an idea what they’re talking about. Apparently the index number they gave means that the anti-MAG is about 15 times normal.

By the way, I just updated the chart to give better information about the IVIG’s. Unfortunately, I did not keep a record of the exact dates. Which I should have.

Take care.

[IMG]http://www.ourbluemarble.us/forum/blood_tests.jpg[/IMG]

Thanks Allaug and Norb for good sound advice and explanations.
After reading both of your replies, I believe that I should wait for my next appointment in mid Feb and at that time ask for
1. blood tests to include the different globuline levels
2. a retest of the anti-MAG IgM.
This last test is done, I think in Missouri. Our medical system pays for the testing which apparently costs about $600. The only cost to me is the Purolator which is $50.
Norb, you mentioned that your anti-MAG levels were 15 times normal. When I was last at the doctor’s, they told me mine were 30 times normal. I have not seen the absolute result and will ask for it the next time I’m there.

On another note, today was the worst day for me so far in terms of numbness. While walking in bare feet, I did not feel confident with my balance. So I can state without a doubt that the Rituxan has not yet kicked in, but that will take time and maybe another series of treatments given the elevated levels of anti-MAG initially. I hope I don’t sound depressed because I am not (yet). Maybe if the whether is better tomorrow, the numbness will be better as well!! And there is no pain, which is a blessing after reading what some on this forum are going through.

By the way, I came across another trial in the use of Rituxan for the treatment of Neuropathy with anti-Mag antibodies. It was being conducted by the NINDS in Bethesda, but on further searching I found a site whcih indicated that the study had been completed. [url]http://clinicaltrials.gov/ct2/show/NCT00050245[/url]
I wonder how we could get the findings of this trial?? I’ll see what I can find out.

Andrew

Andrew, if your anti-MAG test is being done in Missouri, it most likely is the same place where my first one was done in 2005: the neuromuscular institute at the Washington University in St. Louis. They report results in absolute numbers, again without unit of measure. If I divide my 140,000 by the normal range of less than 1500, I get 93 times normal. This is probably correct. I’ve seen numbers in the millions.

The director at that institute is Dr. Pestronk. You may have seen his publications on the use of Rituxan in the literature. I found their website very interesting. [url]http://www.neuro.wustl.edu/neuromuscular/antibody/mag.html[/url]

I expanded my chart one more time adding information about symptoms.

Hi Norb – thank you for your excellent answer to some of my questions a few days back.

I noticed something else from my records that may or may not have any consequence. In Sep ’05 my quantitative immunoglobulins tested high at 400 for IgM, as I posted earlier. At that time my IgG count was 1460, which is on the upper limits of normal. Then, six months later in Mar. ’06 I had a second lumbar puncture, as a Mayo Clinic doctor wanted to have a multiple sclerosis panel run just to make sure.

This LP detected very well-defined oligoclonal bands in my CSF, which indicate abnormal synthesis of gammaglobulins in the central nervous system. These bands are a marker for MS, but also can indicate inflammatory conditions in general. My CSF protein count was 55, and my diagnosis of CIDP Lewis-Sumner variant remained. Another part of an MS panel is to measure IgG levels in the serum and the CSF to look for ratios that are out of whack. In my case the ratio was within normal.

However, the IgG level in my blood was only 320, which is well below half the lowest limits of normal (694-1618)

So, in Sep. ’05 my IgM was 400 (high) and IgG was 1460 (upper limits of normal). Then, six months later my IgG had dropped way down to 320. IgM was not measured at that time.

Additionally, since early of ’05, and to this day, my WBC runs low. I have a CBC run prior to every IVIG infusion, and the WBC typically runs between 2.0 to 2.5, with low neutrophil counts of around 1.0.

Maybe these are pieces to a puzzle, maybe not.

I keep looking at this thread to learn from you all. Especially interesting is Norb’s chart. I should know but how long ago is it since your problem started Norb?
Similarly with all of you – Allaug, Andrew etecetera.
I ask because I have just completed the update form for the CIDP Network here in the UK. At least 2 others are PDNers rather than ‘pure’ CIDP.
I wrote that when I was eventually diagnosed I was told that it was believed that it ‘is slowly progressive and mainly sensory’. True enough but after 14+ years the progression is very definitely in pain and not particularly neuropathic pain. Chaotic disorder in the behaviour of the motor nerves leading to the muscles in my feet is causing very painful cramping of the tendons. Does that ring any bells with you anti-MAG folk?:(

Why can’t I cut and paste Norb’s chart to send to my dr? As you all know, Dell will be getting Rituxan in March and I wanted his neuro. to see Norb’s interesting results.

Thanks for any help.

Love, Lori

Lori,

Right click on the chart, then select “copy image”. You can now paste it into a word document. It won’t copy into notepad. If you don’t have word, then you can select “save image as” and print it from your saved file.

Hope that helps.

Best wishes, and hugs to Dell

cd

[QUOTE=kenspdn]. Especially interesting is Norb’s chart. I should know but how long ago is it since your problem started Norb?[/QUOTE]
Ken, it all started in 2001 while in the Peace Corps in Thailand. During my exit interview with the nurse I reported a slight numbness in my toes. I pretty much ignored it for the next year or so. It gradually got worse. In 2005 my feet were totally numb. A year later my hands started to get affected also. There is a detailed chronology on my CIDP website if you’re interested.
[QUOTE].. motor nerves leading to the muscles in my feet is causing very painful cramping of the tendons. Does that ring any bells with you anti-MAG folk?:([/QUOTE]
no, it doesn’t. Reading about the pain you and other folk have to endure makes me realize how fortunate I really am. I just have a very slight ache in my calves most of the time which I usually ignore. It probably is caused by my labored gait pushing the rollator.

I first noticed something peculiar when I was running in about August 2006. It felt like I had blocks under the balls of my feet. Of course in retrospect, this was numbness of that part of my feet. My doctor shrugged it off, but things got worse fairly rapidly toward the end of the year when my toes felt numb. Then began the series of tests toward the final diagnosis in about September 2007. When I look back, I have to say that I was experiencing weakness months before August 2006, but I mistakenly chalked it up to other reasons like being out of shape. Today I can walk without a cane, but I have some balance issues, numbness in feet up to the tops of the calves, in my hands, and weakness in lower legs and feet.

Like Norb, I am very fortunate in not having any pain. Might I say “comfortably numb”?

Rituxan treatments are the only medication I have had, 4 infusions of 800 g each in December. Am now waiting patiently for improvements. For the first three weeks after treatment, it felt like things were continuing to get worse despite the treatments. However, things may have stabilized now (I hope). Time will tell.

Andrew

Dear Norb,
Glad to hear you are still safely using your rollator. Some time back I visited your web site and it inspired me to pull out of my depression and get back on track with my treatment.
You suggested I introduce myself to everyone but I am not sure this is the proper forum (thread?) in which to do so.
Meanwhile, I came across this url with regards to Rituxan and thought I’d share it here. the first thing I saw was a banner at the top of the page reading Contact us for help getting your insurance to cover treatment, the address is [url]www.cidpusa.org/rituxamab.html[/url]
Best regards to all,

Hello Veronica, welcome to the forum. To introduce yourself it would be best to start your own thread. I am not sure everybody reads this particular one about CIDP — Rituxan.

Thanks for the link.

Take care

I finally received the missing results for the last blood tests. Anti-MAG IgM dropped by 20%. This is the same percentage as all of the IgM. I’m trying to understand what this might mean. Rituxan removes B–cells and following treatment antibodies would get depleted slowly since no new ones are being produced. I expected this to happen faster since the half-life of IgM antibodies is 5 – 10 days and it’s been two months since I finished treatment. It is quite possible that the Rituxan did not remove all the B- cells and some of them are still producing antibodies.

Regardless, the fact that the overall number of IgM dropped by the same percentage as anti-MAG IgM seems to indicate that Rituxan got to the aberrant B-cells along with the good ones. Does this make sense?

The numbers also mean that there are still 80% anti-MAG IgM in circulation. This would explain why symptoms have continued to deteriorate.

PS I updated the chart I posted earlier. I also included the results of the immunofixation.

[QUOTE=norb] Anti-MAG IgM dropped by 20%.
[/QUOTE]

Hey…that’s great news Norb!! Its working! Simple math says 10% drop per month = 10 months to elimination. However, I guess the Rituxan has a life expectancy too and maybe you will be due for another infusion sometime to finish the outlaw B-cells off once and for all.

I drew the following chart to show what may possibly be a representation of how the Anti-MAG levels fall during a series of treatments:

[ATTACH]1121[/ATTACH]

BTW, To attach a chart, I discovered that you can use Irfanview (free photo viewer) and simply paste the chart into the Irfanview frame and save as a jpg. Works great.

Andrew

Andrew, yes, it is pretty encouraging. I am due for another treatment in April and as you were saying hopefully this will take care of whatever is left. I’m still not sure whether we are dealing with just one aberrant B-cell or many.

Here is what I did to convert the spreadsheet to a JPEG file: I used printscreen and pasted it into Photoshop. There I cropped it, reduced the size and saved it as JPEG. There may be other photo editing programs that would allow you to do the same thing, I’m not sure. Or there may be easier ways I’m not aware of.

Norb,
I edited my previous post to include the chart I was trying to draw and save.
Cheers
Andrew

Hey Ya’ll,

Since Dell does not have Anti-Mag (he’s 3 years old), do you think his b/w will be any different than yours.

What will the dr. be looking at? If you want, I can post some of his current b/w. Basically, his b/w looks the same each time. They dr. is not happy with the lympocites so maybe he’ll be looking at those numbers.

Are there any b/w the dr. might not KNOW TO RUN that we should run. His dr. has been prescribing Rituxan for many patients but Dell will be his first CIDP patient to be put on Rituxan.

Thanks for any feedback.
Love, Lori

Hi Lori
I am by no means a hemotologist ( I can’t even spell the word). But I kept the list of all the blood tests they made me go through when they were trying to diagnose the cause of my numbness. Here they are:
[U]Biochemistry[/U]
Glucose (fasting)
Creatinine
Uric Acid
Sodium
Potasssium
Chloride
AST (SGOT)
Alk. Phosphatase
Bilirubin (total)
Urinalysis (chemical)
[U]Hematolgy[/U]
Blood film exam
Hemoglobin
W.C.B. count
Hematocrit
VDRL
[U]Other[/U]
ESR
ALT level
Platelet count
Serum immunoelectrophoresis
IgG, IgA, IgM quantitation
Serum CK
Serum folate
RBC folate
Serum Vitmin B12
ANF
RF
Serum protein
Serum albumin
Serum calcium
Serum magnesium
anti-ds DNA
TSH
anti-GM1 ganglioside antibody
C3, C4
ACE level
cANCA
pANCA
2 hr glucose tolerance test

I think that you can get information on the blood tests online to see what they are all for.
In addition, on separate occasions, they took a blood sample and sent it away to a lab (in my case in Ottawa) to determine if it was a genetic problem. They also sent a sample for Anti-MAG testing at University of Washington in Missouri.

I’m sorry I cannot give any advice, per se. Just a list of what they measured for me. I guess if the doctor skips any of the above, you can check them out to see why those particular tests are run and whether it might be appropriate for Dell.
I hope it works out OK
Andrew

Hi Lori, are Dell’s CBC and metabolic panel values normal? Mine usually are except eosinophils which have been high since I started having symptoms in 2001. There possibly is a connection to the anti-MAG IgM and the underlying lymphoma. Eosinophils are supposed to fight parasites and cancer. Lymphoma is kind of a cancer. After we came back from Thailand in 2001, I had endless tests for parasites but nothing was found. At that time we did not know about the lymphoma. None of the doctors so far have been able to confirm a connection between my eosinophilia and anything else.
I did not have as many tests as Andrew. I had special tests to detect the anti-MAG IgM and anti-GM1 ganglioside. In addition SPEP (serum protein electrophoresis) and immunofixation to show the IgG, IgA and IgM levels as well as a possible M– spike indicating a paraprotein or monoclonal antibody. Anti-MAG IgM is such an antibody. These are the most important ones in my opinion. In order to get these expensive tests done, there has to be a suspicion of a paraprotein based on history, symptoms and progression of the neuropathy.

I had a few other tests done which also are on Andrews list. Some of them usually are only ordered by a hematologist/oncologist and not a neurologist.

I hope I gave you a good enough answer. If you want to talk to me on the phone, let me know and I’ll
sent you the number. I am usually home most of the time since I cannot go anywhere. Carol broke her left hand a few days ago. Since she’s left-handed and my hands are pretty useless, we both are stuck at the house. We did arrange for meals on wheels for the next few weeks. So at least we won’t starve.:D

Andrew, my reaction to your chart was: oh no, I don’t want it to take that long. But today Carol found an excellent more recent PowerPoint presentation in PDF format. The depletion of anti-MAG IgM after Rituxan treatment is shown for nine patients. After the 12th month one of them was still at 100%. But see for yourself.

[IMG]http://www.ourbluemarble.us/forum/antMAG_depletion.jpg[/IMG]

Here’s a link to the presentation:

[url]http://myeloma.org/pdfs/Kos2007_Nobile-O.pdf[/url]

Congrats to Carol for finding that chart and presentation. That was for sure the missing information in our knowledge base. My chart was totally a guess, but surprisingly, if you look at the Anti-Mag level I showed after 12 months at 30%, it was not far off the grouping of levels after 12 months in the offical chart at ave 40%. I assumed a second dose of Rituximab which may not be realistic.
It was interesting to note in slide 16/48 of the presentation that some patients had double doses of Rituximab with a lower % improvement than single doses. Of course, with such small populations, the statistical validity of any conclusion regarding the effectiveness of double doses would be questionable.
I have often wondered, assuming there is a noticeable decrease in Anti-Mag antibody, whether there will be another series of Rituxan treatments or a maintenance dosage of Rituxan every so often to maintain the Anti-Mag IgM behold the threshold level associated with the PN. I guess time will tell.
Again, thanks to Carol for finding that excellent report.
Have a good weekend
Andrew

i also had the rituxan treatment but it was no help.

[QUOTE=connie connor]i also had the rituxan treatment but it was no help.[/QUOTE]
Hi Connie,
Do you also have anti-MAG IgM like Allaug, Norb and I? I realize that ours is a variant of CIDP, but not exactly the same, and therefore the function of the Rituxan may not be identical.
Best regards
Andrew

[QUOTE=Andrew].
It was interesting to note in slide 16/48 of the presentation that some patients had double doses of Rituximab with a lower % improvement than single doses. [/QUOTE]
I found that curious, too. One possible explanation might be a stronger reaction by our immune system to the higher dose leading to a faster elimination of Rituxan. The fact that I had a slight fever after the first infusion indicated to me that the immune system does in fact react to the Rituxan.
[QUOTE]I have often wondered, assuming there is a noticeable decrease in Anti-Mag antibody, whether there will be another series of Rituxan treatments or a maintenance dosage of Rituxan every so often to maintain the Anti-Mag IgM [/QUOTE]
Since anti-MAG is still present after 12 months this would indicate that there are still aberrant B cells in circulation. Another treatment would make sense. In my case, I’m scheduled for one in April. However this is supposed to treat lymphoma as the underlying disease. A slow-growing lymphoma like mine tends to come back after a while.

A few days ago I found a table showing a breakdown of half-life for different types of antibodies. While it is three weeks for IgG, it is only five to 10 days for IgM. This sheds quite a different light on the significance of the chart showing depletion of IgM.

[QUOTE=norb]
A few days ago I found a table showing a breakdown of half-life for different types of antibodies. While it is three weeks for IgG, it is only five to 10 days for IgM. This sheds quite a different light on the significance of the chart showing depletion of IgM.[/QUOTE]

Hi Norb
Surprising!! I did a search after you mentioned the half life of IgM and came across a similar table. Now I am trying to get a grasp of what this means in layman’s terms!!
Mathematically it means that after 10 days half the IgM are gone and the rest not far behind (down to 3% after two months and all gone in three months or less).
That might explain the very different results of different Rituxan patients. The whole key to success would be the elimination of the rogue B-cells, because the lives of the IgM are short, but until the faulty B-cells are gone, the anti-MAG IgM is still being produced. Some patients must have been “luckier” than others in that the Rituxan randomly found the rogue B-cells sooner and results were dramatic.
Do you think that is the explanation (in my simple terms)?
Andrew

Andrew,
that’s the best explanation I can come up with. I wonder about the Rituxan. Since it is IgG its half-life normally should have been about three weeks. However, it binds to the B-cells and also gets attacked by our immune system. As a result it’s halftime probably is less than that.

No improvement yet here. On the contrary, my hands seem to be worse still. Walking with the rollator has become more and more difficult over the last few months . A few days ago I finally got a power chair. Unfortunately, we have not figured out yet how to fit it into our car. So I’m limited to the house and a few miles around the neighborhood. Of course, a few months from now I won’t need it anymore.:D

Hi Norb
Sorry to hear that you are now having to resort to the use of the power chair to get around. A good friend of mine who has MS also has a power chair which has been great for him. They bought a van and had it converted so that the chair can be lifted into the van. But I agree with your last sentence…you should not need it for long.

For me, I’m not sure whether things are still deteriorating now or not after about 6 weeks since the Rituxan. Certainly there is no noticable improvement. I believe that I may be getting used to the loss of sensation in fingers and toes now that it is a normal day-to-day thing. Some days seem better than others but so do some days feel worse than others.

I did the math based on a half life of 20 days for Rituxan and indeed the second series of infusions after somewhere around 6 months (or a little less) makes sense. I guess that could vary as the Rituxan is depleted also by the body’s own immune system.
I tried to do some research on the internet and came across a study by A Pestronck et al titled “Treatment of IgM antibody associated polyneuropathies using rituximab”. Have you had a chance to read this study?
BTW, have you heard anything from Allaug lately? I wonder how she is making out…whether she has noticed any improvement from the Rituxan.
Take care and keep the faith,
Andrew

Dr. Latov suggests a 6 month cycle for maintenance, I am almost 14 months since my last infusion, protein is coming down slowly.
so I may revisit this treatment

I dont think the progenerator B- cell thesis holds particularly given the half life of IgM and the efficacy of rituxan in serum. I suspect its the memory issue and non serum based B-cell keeps this as a life long issue.

even with profound immuniosuppression the literature suggests relapses.

Norb my original pessimism for this course of therapy has been lessened, hang in there it may take a awhile

To all my friends,

I have not been on the site in the last week or so.

Norb, I will send you Dell’s latest b/w results after I have them faxed today. We have been batteling a horrible diaper rash. He’s never experienced anything like this. For the past 2 days, he has not left the couch. It hurts to move.

The neuro. called him in the yeast med. you take by mouth, fluconozole, but I have to take him into the peds. office today, although I was trying to avoid it. The home health nurse called the neuro. yesterday and described the rash over the phone.

The peds. office will disenfect a room for us. Anyway, I’ll get back with ya’ll today or tomorrow with results.

We are still shooting for March for Rituxan.

Love, Lori

[B]Lori[/B], poor kid That sounds terrible. I hope he gets over it soon.

[B]Michael[/B], your comment about memory B-cells got me to do some research since it sounded pretty plausible. I found another possible explanation: long-term plasma cells. Up until now I thought plasma cells in circulation were short lived, only about four to five days, but this article presents a different story:

[QUOTE]In addition to memory B cells and memory T cells, which reside mainly in the peripheral lymphoid system, animals retain plasma cells, preferentially in the bone. The continued production of antibodies by these long-lived plasma cells is crucial for immunity, because such antibodies provide immediate protection without the requirement for clonal expansion and differentiation of B cells….. Plasma cells in the circulation are presumed to have a very short half-life, with their persistence dependent on gaining access to a limited number of specialized survival niches. (Nature Reviews Immunology 6, 785-790 (October 2006) | doi:10.1038/nri1938 David Tarlinton “B-CELL MEMORY: ARE SUBSETS NECESSARY?”)
[/QUOTE]

Norb,

I finally got the b/w results. I’m only listing the things that are out of wack. Dell is only slightly better. He walked a little today but is asleep on the couch now. I’m waiting for the peds. office, they cultured it yesterday.

Creatinine low 0.2 normal 0.5-1.4

alkaline phosphatase high 140 normal 38-126
HGB low 11.6 normal 13-17
HCT low 34.5 normal 38-48
PLT, auto high 443 normal 130-400
MPV low 6.6 normal 7.4-10.4
lymph% low 14.9 normal 20.5-51.1
mono% high 12.2 normal 1.7-9.3
eos high 8.7 normal 0-5
mono high 1.1 normal 0.11-0.59
SED rate high 21 normal 0-20
Eosin high 0.8 normal 0-0.7

These are the normal b/w that is done each month. I guess when the time comes for Rituxan, we’ll do additional, but I’m not sure.

Write if you have any questions,
Love, Lori

Norb, reclusive entities I think, I am searching/hoping for a steady state condition ,with rituxan as the modulator. I suspect Ive come full circle on this

I’m off to Thailand for the summer semester

[QUOTE=Dells mom]I finally got the b/w results. [/QUOTE]
Lori, I don’t know much about these items. Have you talked it over with his doctor? What stood out for me was the eosinophil value since mine has been high ever since I started having CIDP symptoms. The only comment I got from my neurologist was: “fascinating”. What I did find out was that eosinophils fight parasites and possibly cancer. Years ago I had endless tests for parasites and nothing was ever found. I wonder if the eosinophils have anything to do with the low-grade lymphoma I was diagnosed with last year. I don’t have any outward symptoms like swollen glands etc. except the neuropathy. But lymphoma means that there are B-cells proliferating out of control. I did have a whole body MRI/CT scan which was negative for any cancer.

Hey Norb,

The definition of eosinophils: “white blood cells of the immune system responsible for combating infection and parasites in vertebrates. Also control mechanisims associated with asthma and allergies.”

As soon as I read what you said about swollen glands, I remembered our neuro. telling me a few times that Dell’s glands were swollen. At one time (when we were going back and forth to the hosptial 1 day a week) they stayed swollen for a longer period.

Because of the eosinophil number ALWAYS being high on Dell, we took him to allergy dr. He’s done some additional testing there and everything that he’s done just points to allergies, him saying Dell has ecexma, etc.

Now, I’m worried. I think I’ll do some additional digging.

Today is day 5 of his rash. You can not believe how bad this has been. I think I will start a post about it. I would like to know how he got so much yeast in his system or did it get bad because of his immunity being down because he’s on solumedrol.

Thanks for the post.

Love, Lori

[B]Lori[/B], the rash not going away could easily be the result of the Solumetrol since it lowers the immune system. I’m not sure pursuing the issue with the eosinophilia will get you anything especially since the numbers aren’t really that high. Like you said, it’s probably just a reaction to allergies. I wouldn’t worry about it too much.

If there is in fact a connection with any underlying disease like lymphoma as I suspect in my case, the Rituxan should hopefully take care of that. I have no idea how common something like that would be in children.

Earlier in this thread I posted a chart showing depletion of anti-MAG IgM following Rituxan treatment. Since I could not access the original article I contacted the author directly. Dr. Susanne Renaud in Switzerland just send me copies of the study and a second follow up one using twice the amount of Rituxan. The second one was published last year in “Neurology”. Here is one very interesting finding:
[QUOTE]At month 1 B cells in peripheral blood were undetectable and this effect persisted until month 9 when B cells began to remit.[/QUOTE] If any of you is interested in getting copies of these two articles, please, send me an e-mail.

There is an article from WEB MD discussing Rituxan shows promise for MS.

[url]http://www.webmd.com/multiple-sclerosis/news/20080213/rituximab-shows-promise-for-ms?src=RSS_PUBLIC[/url]

Sue

Hi Sue
That is a very interesting article you came across. A friend of mine has MS so I will pass it along to him. There are several different types of MS and I’m not sure if he has the same type as the control group in the trial. Nevertheless, it seems like a completely new direction of research into the disease. It sure is amazing to see the progress they are making in medical research these days.
Will you be going to the GBS/CIDP hike at the Kortright Center in May? I guess it is quite a drive from Cornwall.
Take care
Andrew

Hi Andrew I haven’t heard of the hike I don’t on the Canadian website very often. Will have to check it out.

Sue

[QUOTE=norb]Dr. Susanne Renaud in Switzerland just send me copies of the study and a second follow up one using twice the amount of Rituxan. The second one was published last year in “Neurology”.[/QUOTE]

Norb
Thank you (dankeshane) for sending me the two studies. I read through them both carefully and tried to draw some of my own conclusions other than the statistical results of “4 out of 8” type conclusion. For anyone reading this message, it may not make much sense unless you have read the studies. Nevertheless here we go…

I was able to equate the patients from study 1 (single dose of Rituxan) with those of study 2 (double dose of Riutuxan). Patient 1 from study 1 declined to join the group for study 2. Patient 7 from Study 1 unfortunately did not make it through study 2. The rest were in the same order.

Looking at the Study 2 results of the patients,#2, #3, #4 and #7 all did very well. It is hard to draw any similarities between them based on sex, age, or disease duration at study entry.

I wonder about the duration between the infusions of the two studies of almost two years. B-cells were undetectable up until month 9 after study 1 infusion, so they must have been way up at close to normal again after almost two years. I wonder if this could be considered a sort of time lost? If the levels had been kept low by maintenance infusions, would the results have been better?

Another casual observation I had was that I have never heard the number 100% in any study (except the decline in detectable B-cells). Does that mean that there is no 100% cure? I should not sound negative, but I had hoped that somewhere we would read about a patient who was cured totally and eventually regained total nerve function. Of course, any improvement is to be appreciated, but it would be nice to know that someone somewhere regained full strength and nerve sensation.

Finally…the most significant observation of all for me! It hit me like a ton of bricks. In the references for the second study, reference number 6…Bril V, Ellison R, Ngo M, Bergstrom B, Raynard D, Gin H. Electrophysiological monitoring in clinical trials. Roche Neuropathy Study Group. Muscles Nerve 1998;21:1368-1373.
My doctor is V Bril.
The drug company that supplied my Rituxan is Roche.
I hope they are both right!!

Evidently we are still in the middle of the experimentation stage with this drug Rituxan for treatment of antibodies to myelin-associated glycoprotein.

What are your thoughts on this, Norb?
Andrew

Andrew, yes, the results are rather disappointing and not as positive as I’ve seen in other studies. Somehow I was hoping for a magic bullet. I was trying to find an explanation of the neurological symptoms score and the neurological disability score. The study lists as the source a book by Dyck which costs over $400. An abstract of a Japanese study mentions a score of 69. The scores in Renauds study ranging from +16 to -21 don’t make any sense to me without knowing what they are based on.

In another place of the study improvement of strength of 13% after one year and of 23% after two years was mentioned. I assume she means physical strength. I must have missed something because in this context Dr. Renaud all of a sudden talks about 16 and 21 patients each for study one and two. All other data refers to nine patients only.

Although no explanation is given for the limited depletion of anti-MAG IgM (see earlier graph posted by me), I am no longer surprised by that based on data I found elsewhere. Plasma cells in circulation have a life span and IgM has a half-life of only four to five days. Since according to the study one month after the Rituxan treatment B-cells are no longer detected and only start coming back after 8 months, no B-cells should mature into new plasma cells producing antibodies. IgM therefore should decline much faster than shown in the study. Even after 8 months antiMAG IgM does not decline to zero. The median is 59% of baseline after phase I and 16% after phase II (double dose of Rituxan 2 years later). The problem are so-called long-lived plasma cells. According to another study I e-mailed you a few days ago, in addition to memory B-cells some plasma cells (active B-cells) remain in the bone marrow fo more than 20 years producing antibodies. Since plasma cells no longer have CD20 markers, Rituxan cannot remove them. Dr. Renaud did not react to this specific issue in her e-mail to me.

Overall, I question the usefulness of the study as far as we are concerned.

Hi Norb
Well, I tried to get through the paper you sent regarding Survival of long-lived plasma cells. Even the abstract was somewhat difficult to understand, but at least it does explain one thing regarding the B-cells. As you say, the plasma cells can live on for 20 years and Rituxan does not attack them because of the missing CD20 marker.

Regarding the NDS and NSS scoring, I could not find the exact definition, but I did find a couple of things including a similar type of scoring form, as follows:

[ATTACH]1133[/ATTACH]

It may be a bit hard to read given the 41 kb maximum size. The text reads:
[COLOR=”Blue”]Form used for obtaining the neurologic disability
score. For obtaining a raw neurologic disability score
as used here, the values in the columns marked
“Right” and “Left” are added together. The total
scores for motor function and sensation represent the
degrees of motor and sensory disturbance, respectively.
The scoring system is as follows: no deficit (O), mild
deficit (l), moderate deficit (2), severe deficit (3), and
complete absence of function (4). A score of 0 indicates
no neurologic disability, and a score of 64 corresponds
with full disability.[/COLOR]

I also downloaded a paper by Dyck which includes the following statement:
[COLOR=”blue”]Assessment of neuropathy. Neuropathy symptoms and
deficits were evaluated prospectively by a neurologist
(P.J.D.) using a standardized approach. His neurologic
record was used to determine the Neuropathy Symptom
Score (NSS) (abnormality ≥ 1; the range of possible
scores is 0 to 18) and the Neuropathy Disability Score
(NDS) (abnormality ≥ 2; range of possible scores is 0 to
244).[/COLOR]

I guess there must be a scoring form like the one attached which was developed by Dyck et al, but I was unable to find it. And, $400 seems a bit too much to get the form. Also, it seems like there are a few scoring methods available.

I was able to locate the reference to 16 out of 21 patients in the strength test. It came from a study done by A Pestronk et al titled Treatment of IgM antibody associated polyneuropathies using rituximab.

I guess we have to keep looking for longer term study results as well as other information regarding the harm which those plasma cells can continue to inflict long after all the B-cells have been depleted. If that information is in the paper you sent, then I apologize for not seeing it. It was pretty “heavy stuff” for me.
Take care
Andrew

To all my friends with IgM MGUS, I have an appointment tomorrow with my neurologist. She is one of the top neurologists.
So I have prepared a list of some questions as follows:
[COLOR=”Blue”]
• When will we do tests to determine levels of IgM and of anti-MAG?

• Findings show that after differentiation, plasma cells formed from mature B-cells do not carry the CD 20 marker and can last up to 20 years in the bone marrow producing antibodies. Rituxan only targets cells with the CD 20 marker and therefore does not target the plasma cells. What part do the plasma B-cells play in the continued production of anti-MAG, after precursor B-cells have been eliminated by Rituxan prior to differentiation? Is there any way to reduce the plasma cell count?

• Do you have a copy of the forms used for Dyck’s Neurological Symptom Sign (NSS: 0 to 18) and Neurological Disability Sign (NDS: 0 to 244)? Would be useful for correlation with Studies by Susanne Renaud.

• What kind of program for repeat dosage of Rituxan do we envisage. Single dose, Double dose, maintenance dosage, frequency?[/COLOR]
My question for all is whether you have additional relevant questions which need to be asked at this time. If so, let me know.
If I succeed in getting answers, I’ll for sure let you know.
Regards
Andrew

Andrew, these questions are great. Off the top of my head I cannot think of any additional ones you might want to ask. I’m curious to find out what her answers will be. Please, don’t mention my name because she might end up hating me for contributing to this.:eek:

I just send a personal e-mail to Dr. Dyck at Mayo Clinic asking for a copy of the score criteria.

Here another comment about Dr. Renaud’s study: the changes on the NSS and NDS are not very meaningful without knowing the original scores. This might illustrate what I mean:

[IMG]http://www.ourbluemarble.us/forum/RituximabNDS.jpg[/IMG]

Let’s take patient number two: if I interpret the number given in the last column correctly, he improved by 21 points. If his original score was the maximum of 244, in other words totally disabled, his new score would be 223. With a 5% improvement he still would be pretty disabled. However, if his original score was 21, his new score would be zero or completely symptom-free; a 100% improvement.

Hello to all my friends,

The clock it ticking. We have heard we are going to the hospital 2/29th for Dell’s first infusion. Now, I’m scared.

It’s really all the unknown things and 2 years down the road, I hope I can look back on this and say “it wasn’t so bad.”

I’m more worried about germs than anything. My husband and I have talked about ppl. taking their shoes off before coming into the home (tracking in junk on their feet).

Dell has had a rough couple of weeks. He had the butt rash going on with a stomach ache. The stomach ache continues but not as bad. Thursday, he fell and got stitches. Yesterday, we dropped off urine and poop to see about hemocult (negative), ova cysts and parasited and pathogens in stool.

I’d like to get all this sorted out before the Rituxan.

Just wanted to keep ya’ll posted.

Love, Lori

Hi Lori,
good luck to you. I can understand your anxiety. Carol and I were anxious too but everything turned out okay.

Taking off shoes in the house is a very good idea. Also make sure to ask your visitors to do the same thing. This has been a custom in our house for many years ever since we came back from living in Thailand. Nobody there wears shoes around the house.

Don’t wait too long to see a doctor if he starts having any kind of infections. About 2 weeks ago or so I hurt my right big toe. It was bleeding quite a bit. I don’t know how it happened because I don’t have any feeling in my feet. A few days later it started to look infected. I put antibiotic cream on it but it didn’t seem to get any better. I decided not to wait any longer and saw my primary doctor who prescribed oral antibiotics. The infection is pretty much gone by now.
Take care and a big hug for you and Dell.

Hi everyone
Well, no matter how much you plan something and map it out in your head beforehand, it never seems to go like that in the end, does it?
The meeting started off with questions about my improvement since Rituxan. I said that I had not noticed any improvement, but that things have not deteriorated either.
Then they decided to do another EMG. As a reminder, my only other EMG was last May, and I had Rituxan in December. The discovery from this EMG and from vibration testing was that things had deteriorated. In fact the vibration test levels on my feet were double the values of last May. So I tried to explain that there could very well have been significant deterioration prior to the Rituxan and that this would likely exceed any regrowth or repair of nerves, which is a slow process.
Then they did strength tests and I gave it all I could, to which they said that I had improved in strength!! Wow.
Then the neurologist came back into the room and we talked about the coverage for Rituxan and what I wanted. I said that Rituxan looks like my best chance for a cure based on all my readings and that I am therefore in favour of more Rituxan, even if I have to pay for it with my pension savings.
So…here is the interesting part…I will get a 375 mg maintenance infusion of Rituxan once per month for the next three months with monthly follow-up visits to monitor results.

With regard to the list of Questions, they took a copy and said that they would get back to me.

One final note…I have been encouraged to write to my member of parliament to pressure our medical system to provide coverage for Rituxan in the treatment of anti-MAG MGUS. In my opinion, once we have breached the dike in one spot, the rest should start to cave in…private insurance, medicare, etc.

So…more Rituxan…more chance to knock down those B-cells.

I asked about avoiding travel due to the immuno-suppression, and the answer was that I should continue to do what I normally do, like avoid crowded places, get plenty of rest, etc. I found this answer to be a bit naive given that an impaired immune system is an invitation for bacterial infection. But then, it was not the neurologist who said this…it was the technician.

Andrew

Andrew,

The tech. said you could continue to travel and things? Do you wear a mask?

Our plan for Dell is to keep him out of places but if we do bring him anywhere, he will wear a mask. We FINALLY found pediatric masks. They are real cute.

Right now, he wears one into the school (to p/u his siblings) and the drs. offices and hospital. I don’t put one on him now in Walmart, I feel like we are doing ok as long as ppl. don’t come up and touch him. He rides in a stroller so he doesn’t touch those nasty carts.

You, being a man, are you shaking hands alot? I would keep germ x with me if I were you. It’s in my console in the van, I use it EVERYTIME I pay for something at a window, touch a door of a store, etc.

Looks like we have to postpone the Rituxan. Took Dell to dentist this morning, he needs 2 teeth filled and 1 crown. I am down about it all but tomorrow is another day. lol

Norb, You wrote about the infection. We have a horrible staph epidemic here. My best friend’s uncle has it in his heart, an ancquaintance passed away this week from it (she lives about 4 miles from us) and our bookeeper’s brother in law died in December. I don’t think these ppl. are getting it in the hospitals, it’s everywhere. I don’t know if they have traced it back to Hurricance Katrina or what or if it’s a national problem.

I’m waiting to hear back from either the neuro. or the dentist about the Rituxan.

Love to you all,
Lori

Good morning, all….
Yesterday I spent some time with Liz (codystanley), and we were just talking about Rituxan. My husband John (CIDP/MGUS) received Rituxan in June 2006 at the New York University Cancer center. Medicare and his supplemental insurance covered it, because of the MGUS. He had really good results and had a single infusion in January 2007. We hoped to be able to continue with periodic infusions, but we’ve been unable to get it covered under Medicare. Instead he gets 3 IVIGs each month, which helps, but hasn’t had the same effect as the Rituxan. We too wonder why Rituxan isn’t available to CIDP patients, especially in terms of the comparative savings over IVIG.

Emily, Rituxan is not approved by the FDA for CIDP/MGUS, only for non-Hodgkin’s lymphoma and I believe rheumatoid arthritis. There are trials going at Mayo that will take quite a while.

The only reason I received Rituxan last October after two years of trying was a new diagnosis of lymphoma. Medicare and my additional insurance paid without any problems. I’m due for another treatment next month.

In Jan 08 I visited this thread because my moms docs at The Clinic decided to give rituxan along with an IV steroid ( sorry I forget the name)

Here is my moms story ….. My mom was a healthy 57 year old woman……..GBS dx Aug 07 CIDP dx Sept 07 she was on prednisone, cellcept (which is supposed to take 6 months to start working- whatever that was supposed to do) IvIg every week sorry don’t know the dosage. In Aug she was completely paralized she could only speak & barely swallow she had a loading dose IvIg then she did great she was sent to rehab for about a week to get her walking back steady and swallowing & she was home early Sept then maybe a week later SMACK completely paralized within 2 days back to The Clinic where they started the Plasma Pharesis Wow no response it was horrible my mom was blinking for yes & no it was scary!! So after the 5 treaments with no response they switched her to the IvIg and slowly this time a response they said she was really at her worst so that’s why it took so long to come back she was there for about 3 weeks another does of IvIg before she left. Now she is on that list of meds back at rehab for about 2 weeks and they have her set up to get the IvIg every 2 weeks
she only made it 10 days tingling & numbness is back & she was sliding back down hill so back to The Clinic they change her to a higher dose steroids
60 mg & up her to IvIg every week & back to rehab she is doing great with the rehab walking with a walker 50 feet transfering with a transfer board on her own she is feeling great except for her blood pressure the higher dose of steroids is throwing her blood pressure up to roughly 190’s over 110’s so the stupid doc at the rehab takes her off the steroids ( which we now know was her defense to the CIDP along with her IvIg) she is still doing well though & is actually sent HOME!!! the first week of Dec. (In a wheelchair but transferring on her own ) She is doing well for about 2 weeks getting the IvIg at home once a week but little by little sliding downhillwith transferring, feeding herself, bowel control So…… First week in Jan. back to the clinic
They are angry ( that’s putting it nice ) to learn that she is off the steroids & explain that is the reason she is doing worse. They give her the IvIg & NO response now we are worried this has always worked before. So they discuss the Rituxan & we accept & she gets her first dose along with the IV steroid on Friday Jan 11 08 No response but they tell us sometimes it takes a few doses so Fri Jan 18 08 the next dose we think a little better but her respirations are getting worse this is our worst fear she never lost her breathing before CIDP is known for this & we have been blessed not to have to deal with this But now they are discussing intubation with us & she refuses. They explain this will be a last resort they will work with her she agrees understanding we will not leave her like this if she isn’t getting any better within a certain time frame we would let her go. Fri Jan 25 08 she gets another Rituxan treatment. She fights with all her might on Mon. Jan 28
I leave school Rush to The Clinic because the Nurse tells me they are moving her to ICU to intubate sometime later that day ( I made an hour & a half trip praying to God please just let me make it there) I got there and they were getting ready to move her to ICU they let me go in I started talking to her telling her I love her & she wrinkles her forhead like she is trying to open her eyes & wriggles her chin like she is trying to talk I tell her Shhhh just rest mommy I’ll be here all day just rest now. Then the alarms start going off & in come three nurses her blood pressure monitor reads 254/137 they are yelling Darlene open your eyes and doing a sternal rub Nothing I start yelling Mommy open your eyes they pull me out of her quad & I hear overhead Code Blue Henry 62 Bed 12 That’s Mommy!!!!! I start screaming & begging Please NO!!!! They drag me into the hall about 50 Doc’s and Nurses are running in & out A doc walks up to me & says that she ahs a bleed in her frontal lobe and they have to due surgery right away they are rushing her by me I scream I am right here mommy be a Big Girl!!! I call family my father, my brother, everyone starts arriving 3 hrs later they come out & say she had a complete right side bleed it was much larger than they thought. They left the bone flap off because of swelling in her brain & the first 24 hrs are critical. My father & I stay through the night. At 6:45 the Doc comes walking over to my father & I & says there has been a complication she just had another large bleed on her left side that she has less thatn 5 % chance to make it through another surgery & even if she did there is so much pressure & where the blled is she would be a vegetable we declined the surgery & asked him to make her comfortable called family & went to say goodbye this was the hardest thing I have ever done she was my best friend for 32 years & I was not ready to let her go! She was an amazing woman!!!!! It has been a month & her birthday is on March 4th that will be another rough day my days are still blurring together and I am trying to be strong for my children Trenton 12 & Christian 7
I want them to remember how great she was & I will love them like she loved me with ALL my heart!!!

Sorry about the post I was gonna say something about the rituxan and just started typing and couldn’t stop I guess I just needed to tell her story it’s only been a month that she’s been gone & everyday is a struggle.

I think Rituxan was starting to do a little she was getting back a little movement in her hands I know it’s not alot but they had said it would take up to 4 or 5 treatments she only got 3………Her respiratory system was just shutting down…….It was her time to go no matter what they gave her God had decided Jan. 29th 2008 was her day

She fought till that last day she instisted CIDP would not win!!!
You all keep fighting!!!!!!!!!!

Adina,
thank you for sharing your story. I’m so sorry for your loss. Losing a family member is difficult enough, but losing someone in such a traumatizing way is even more difficult. I’m sure it will be a very long time for you to get past all this. Clearly you are a strong person because you know the importance of caring for your children and the future. You story touched both of us. Please, know you are in our thoughts.

Norbert & Carol

It may not be much but there have been some minor improvements since I received Rituxan treatment in October. My tongue is almost back to normal and a few days ago I noticed that I can feel the keys on the keyboard again with my fingertips. I am still almost completely dependent on my power chair and cannot walk without support. I should receive results of yesterdays blood tests in about a week. Hopefully the anti-MAG IgM went down even more indicating that it’s helping.

A friend of mine in Switzerland received Rituxan at almost the same time as I did just one day later. By now his anti-MAG IgM went down by 50%. His neurologist told him last week that it may not be until in June before he sees any improvements.

It’s difficult to be patient.

Norb,
I am so happy there is good news. Although they are baby steps, they are steps. You have been patient and optimistic for a long time, so I know you can do it still! Best of wishes and good thoughts are sent your way.
Dawn

To all my friends,

Friday was Dell’s first treatment. We were happy to be put in icu and watched very carefully. Dell did fine. Almost at the end of the treatment, his temp went to 100.1 and his blood pressure went up a little.

After the treatment, we were put in a regular room for his ivig treatment.

As the Rituxan was going, the dr. came in. He said he had not received the results from the CD subtypes for the lympocytes. I called and got them faxed to the icu. He said he could not understand the lab results, he was not used to reading that labs numbers. He stated if the CD19 numbers were low, Rituxan probably would not do any good.

I wish we had know this before, if we had seen the numbers, we could have maybe opted not to do Rituxan.

He redid the CD’s but when we were released from the hospital, the numbers were not yet completed. I just emailed him to see if they were in.

Dell has a higher temp than normal tonight, 99.9. I gave him tylenol. Did anyone experience a fever days after their treatment?

Norb, glad to hear your tongue is almost back to normal.

Adina, That was a very touching story. The drs. seem like they tried their best.

Love, Lori

[COLOR=”Navy”]This is the continuation of the e-mail exchange with Andrew while the forum was down. This one is from Andrew. It was not me who ran [/COLOR]

Hi Norb

I am now getting more and more convinced that there is some improvement in my condition since Rituxan. It does not feel like the stocking effect comes as high on my legs anymore (up to the knees) and I feel like I have more strength – especially endurance. Yesterday I even went for a short run and survived OK. So I think that I’ll go along with the maintenance Rituxan treatments, but I may try to hold off until April/May/June so that there is a gap of 4 months since the infusions of December. From the literature, knowing that the B cells are wiped out until about month 6 to 9, I can’t understand what the maintenance dosages of Rituxan are supposed to do. If they were free, it would be a simple choice (like taking aspirin).

Take care,
Andrew

[COLOR=”Navy”]While the forum was down, Andrew and I continued our discussion and exchange of experiences via e-mail. Here are some excerpts that might be of interest, not necessarily in the order in which they were sent. The text in blue is mine, and the one in black is Andrews[/COLOR]

Hi Norb

I did some searching on the internet for the natural flora and discovered a wonderful site at [url]http://www.textbookofbacteriology.net/[/url]
It even contains an excellent description of the immune system. From this, I noted that the author talks about plasma cells having a life of only about a week. It would be interesting to know how one might differentiate between the 1-week plasma cells and the long life plasma cells. They must have different functions. Perhaps the long life plasma cells are indeed memory cells, whereas the 1-week plasma cells are innate cells. ????

The part about the natural flora makes for fascinating reading. I had no idea that we are all filled with such a cocktail of bacteria, starting in the mouth and going all the way through.

It seems that there is a balance in the natural flora which can be affected by things like antibiotics for one. Hence, I figure that this balance may have been changed as a result of the Rituxan or the after effects of the Rituxan on the immune system.

I can’t help but think about how much it would mean to me to be able to sit down across from a doctor who really really knows all about IgM MGUS and the treatment with Rituxan. Certainly the neurologist does not know, because it involves so much more than just nerves. The hematologist does not know because it involves the immune system. Would this be the type of thing one could learn about from a trip to Chicago for the GBS-CIDP conference? Have you been to one of them?

Best regards
Andrew

[COLOR=”Navy”]Hi Andrew,

I ran into a problem with my infected toe. After six days of antibiotics it was still not back to normal. Yesterday I decided to go back to see my primary doc. She referred me to a podiatrist. Last year I lost a toe nail which was slowly coming back but severely ingrown. He said because of reduced blood flow bacteria found a niche under it which antibiotics could not reach easily. He pulled off the nail. I hope he’s right. (he was)[/COLOR]

I went for a long walk today. Felt good. I believe some strength is returning, but the sensory neuropathy is unchanged. Also, I had a brain wave last night. Ever since the Rituxan in December I have had minor stomach cramps, rumblings, and gas. It ocurred to me at about 4 am this morning that every night I have yogurt before I go to bed and this is made with a bacteria (albeit “good” bacteria). And we know that the level of B-cells is reduced due to the Rituxan, so whatever part the immune system plays in digestion of bacteria bearing foods is probably reduced. Same might be said for milk and cheese. So today I started on a mini diet eliminating the dairy products (except milk on my cereal – a must). Actually, my stomach feels better already. Have you heard anything about this? If you think it is of use to others, I will copy and paste into a posting on the forum under the usual “CIDP – Rituxan Treatment?” thread.

Take care
Andrew

[COLOR=”Navy”]Hi Andrew

No, I have not heard anything about what affect Rituxan might have on the intestinal flora. I’m not sure that our immune system has any influence since these bacteria probably only populate the matter inside the intestines and not the tissue itself. Antibodies on the mucous membranes prevent micro-organisms from entering.

Take care
Norbert[/COLOR]

Hi Andrew

[QUOTE]I can’t help but think about how much it would mean to me to be able to sit down across from a >
doctor who really really knows all about IgM MGUS and the treatment with Rituxan……..[/QUOTE]

[COLOR=”Navy”]Yes, I know. It’s been very frustrating for me to get good answers. My own oncologist knows everything about cancers and Rituxan but he tells me to ask my neurologist when it comes to anti-MAG IgM neuropathy. As far as he’s concerned the possibility that Rituxan might help with the neuropathy is only secondary to treating my lymphoma. My neurologist actually never set down with me and talked about the immunological part of it. The best answers I ever got were from an immunologist. She participated in the forum for a while probably for professional reasons. This was before the forum was attacked and all the data was lost. Allaug was able to retrieve two of her answers to me. I reposted them but I’m going to include them here in case you missed it.

Tonight I watched a show on the Discovery Health Channel about one of our forum members who came down with GBS. It was pretty interesting but it did not go into a lot of detail about the pathology. Taking off the commercials it probably was only about 20 minutes, too short to get into it. A lot of it was just drama, interviews etc

No, I have not been to the GBS/CIDP conference. Heard good reports.

Take care
Norbert

Hi Andrew

The short-lived plasma cells are the ones in circulation while long-lived ones stay in the bone marrow. If I remember correctly, the author of the article I mailed to you earlier suspects that these are some kind of memory cells which stay around in addition to memory B cells.
[/COLOR] >
\
[QUOTE]Whereas the 1-week plasma cells are innate cells. ???? [/QUOTE]

[COLOR=”Navy”]They are part of adaptive and not innate immunity. More about that later.

I read somewhere some time ago that there are more micro organisms in and on our body than our cells. Also, the immune system is more active in the intestinal area than any other place. I still believe that this doesn’t go any farther than the intestinal walls. Within the material inside the intestines antibodies would simply not be able to perform their function. Inside the walls they protect our body from intruders.[/COLOR]

[QUOTE]Have you had any noticeable change in your condition since the Rituxan? I was thinking that my strength was improving, but today my fingers feel more numb than usual. It might just be from allowing them to get too cold while outdoors during this sub-zero temperature.[/QUOTE]

[COLOR=”Navy”]I have not noticed any improvements yet. However, Carol seems to think that my hands are getting better. I don’t feel it. Andrew, I would expect that you see improvements much faster than me because your symptoms seem to be less advanced than mine. I also read something to that effect about other patients. To give you a more detailed picture of my symptoms here is a link to a caregiver’s guide Carol just wrote]a few days ago. She will be going to Denver next week for a few days and every other week after that to help out our daughter and her two children. She hired a neighbor girl to come over every day to check on me. The guide is for her.

[url]http://www.ourbluemarble.us/Norbert/CIDP/Caregiver/caregiver.html[/url].

See pages 5 and 6

Take care
Norbert[/COLOR]

Hi Norbert
I had a bit of a cold this week, so it is hard to tell whether my neuropathy is any better or worse at the moment.
I am frustrated with my Neurologist. In answer to the questions I prepared, the neurologist’s staff clerk (the word nurse would be too complimentary to him) called me today to say that they do not want to test for IgM or antimag because the two tests would tell us nothing. “The only true test of the Rituxan is whether or not the symptoms get better”. He says that if I do not improve, then the test for IgM and antimag would have been useless and unnecessary.
Have you ever heard such crap? I now wonder whether anyone in the neurology department knows what Rituxan does, other than to reduce neuropathy.
So I won’t be able to compare notes with you two on blood test results following the Rituxan.
Maybe I can order them and pay myself. I’ll check out that possibility.

Take care
Andrew

[COLOR=”Navy”]Hi Andrew

Of course, they are correct in saying that the final proof will be in improvements and not in test results of the anti-MAG IgM. On the other hand, we would like to have some indication that there might be a chance for improvements. The anti-MAG IgM tests would be such an indication. Seems a lot easier here in the US to get those tests some might consider unnecessary.

Back to the innate immunity:

1. Innate or inborn immunity is also called natural resistance. It is our first line of defense. It is nonspecific, has no memory, and is not self-limiting (does not stop). It cannot tell the difference between different antigens. It has two parts: external and internal. The external part consists of the skin, body secretions and mucous membranes preventing the penetration of pathogens into host tissues. For example: the skin (better if oily) prevents penetration of most pathogens. Once pathogens enter the body, internal immunity takes over. It consists of physiological barriers, phagocytosis, and inflammation. Cells involved are monocytes, eosinophils and phagocytes.
2. Acquired immunity is also called antibody mediated immunity. It is our second line of defense. It develops during a host’s life time and is based partly on the host’s experiences with antigens. It is specific, has memory, can distinguish self from non-self, and is self-limiting (except unfortunately not completely in our case). Cells involved are the lymphocites, that is the B cells and T cells. Macrophages, the complement system and inflammation also play an important role.

Take care,
Norbert

[/COLOR]

Hi Norb:

Do you mean, literally, that you went for a run – as in jogging? If so, then that is quite impressive.

Continued success to you.

[QUOTE=Dells mom]As the Rituxan was going, the dr. came in. He said he had not received the results from the CD subtypes for the lympocytes. I called and got them faxed to the icu. He said he could not understand the lab results, he was not used to reading that labs numbers. He stated if the CD19 numbers were low, Rituxan probably would not do any good.

I wish we had know this before, if we had seen the numbers, we could have maybe opted not to do Rituxan.
[/QUOTE]

Lori, Rituxan has nothing to do with CD 19. It attaches to the CD 20 marker on B cells. I checked my text again but it is not quite clear on these particular markers. They belong to a group of differentiation markers involved in cell development. When B cells are activated and develop into plasma cells, the ones spitting out millions of antibodies, these markers disappear. The text says that CD 19 [U]or[/U] CD 20 are expressed. That sounds like it’s either one or the other. On the other hand, the blood tests I had done before treatment found monoclonal antibodies with both CD 19 [U]and [/U]CD 20. It’s quite confusing.

Regardless, what your doctor told you does not make a lot of sense to me. Perhaps the assumption is that low CD 19 also means low CD 20, not enough for Rituxan to target.

This might be of interest: in this study of patients who received Rituxan treatment one month after treatment no B cells could be detected in circulation. They started to come back after eight months.

By the way, B cells [U]are[/U] involved in defending against [U]viruses[/U] in circulation – among other intruders. T cells, on the other hand, fight viruses which have invaded our cells. I got this wrong in an earlier post. So be extra careful. The oncologist asked me Monday if i had any indication of the flu. I said “no but there isn’t much you can do about it except wait it out.” He answered “yes there is. You just have to take medication as early as possible.” So if that happens to Dell you should see the doctor right away.

[QUOTE=Billt]Hi Norb:
Do you mean, literally, that you went for a run – as in jogging? If so, then that is quite impressive.[/QUOTE]
don’t I wish. I’m using a power chair and can only walk a few steps holding onto whatever I can find. Andew must have mentioned that. I couldn’t find it in the earlier post. He did mention a walk somewhere.

By the way, the text in blue is mine, and the one in black is Andrews.

Yeah Norb, I saw the post about running and was thinking DANG, I need to get what he’s getting:) But I think any improvement that you are seeing is a good thing. I’m watching your post carefully to see how things go and wish you the best….

Hi Gabrielle, like I said it wasn’t me who ran. That would have been a miracle at this point. Or it would have happened in my dreams – which is sometimes the case. Wishful thinking!

I am anxious to find out how Dell is doing. If you followed this thread he’s the little boy who just received Rituxan. He does not have my anti-MAG IgM variant of CIDP but common CIDP (for a lack of a better term.) But the way I see it Rituxan should work for him just the same.

Take care

I just read through your outbluemarble story which was a little humbling. Everything started out so benign. I am still a newbie with all of this but spent 8 months thinking it was all going to go away until I got my correct diagnosis. I realize things area changing with me, but in very small amounts. Like fingers numb, and not being able to type well, outside of the walking problems. I did read about Dell too, and will be curious as to his outcome. My neuro is quite amiable and willing to do what I have asked so that is good. Take care, and you live in one of my favorite places in the US:) I spent so much time hiking out there and skiing. I love it there…

Hello to all,

Thank you for your concern for Dell. We had the 2nd treatment yesterday. All went well, actually better than first, although first wasn’t bad either, just 100.1 and a slightly elevated blood pressure towards the end of the 1st.

Horrible time at hospital, nurses passing the buck, didn’t get started with treatment until had been there for 6 LONG HOURS, but that is another post, lol.

Don’t have much to pass along, Dell has had 2 very soft stools but that could also be from solumedrol, it does it sometimes but not always.

Below is the emails my neuro. and I have been sending back and forth. I’m not good on the computer so I can’t color code them like Norb can, lol.
_________________________________________________________________
DEAR LORI,
YOUR CHILD HAS A DISORDER THAT NO OTHER CHILD HAD SO YOUNG. I GOT THE RESULT OF CD19 (SAME AS CD20): ABSOLUTE COUNT 357 (N: 300-1600) AND 18.7% (N: 14-44%). WITH RITUXAN I WOULD EXPECT A DROP OF CD19 TO 0.1-0.6%. THE RISK OF PML IS SO LOW THAT IT GETS PUBLISHED WHEN IT OCCURS. YOU ARE MORE AT RSIK TO BE KILLED IF YOU TAKE THE CAR AND DRIVE EVERY DAY. LET ME KNOW WHAT YOU DECIDE.
THANKS,

Paul Maertens
1505 Oak Bend CT
Mobile 36609
USA

—–Original Message—–
From: Lori Massey
To: [email]paulmaerte@aol.com[/email]
Sent: Wed, 5 Mar 2008 7:13 am
Subject: from Dell’s mom, again

Hey,

I have a serious question that is upsetting me. What is the chance Dell could develope progressive multifocal leukoencephalopathy from Rituxan?

I know it’s mentioned in a MS bulletin.

Also, if the CD 19 is low, are we going to continue with the next round of Rituxan? If the number is low, I would not want to take another round. I might be making a mountain out of a molehill but this is my baby and I’m worried to death. I know all medictions have side effects, just like tylenol but this is a drug that not many ppl. have taken.

Thanks, Lori
_______________________END OF EMAILS____________________________

We did b/w before we started Rituxan, last Friday. Yesterday we did some more but I don’t think I have the rusults. I haven’t had much sleep but I will look through my stuff from the hospital.

Norb,
What b/w do you think you would be interested in seeing? I have CD2,CD4,CD8,CD19,CD56 and absolutes of each. Also have CD4:CD8, they come together on the lab report.

I asked the dr. what his other patients on Rituxan looked like, (b/w) but he had not done b/w on them each week, like he’s doing on Dell.

I’ll keep you all posted. Thanks for the tip on the flu. I ordered 2 boxes of pediatric masks today. He wears them when we go into the general public.

Thanks for all your love, prayers and help.
Lori

Hi Lori, I’m glad you posted the e-mails between you and your doctor. As far as CD19 (read B-cells) is concerned, there’s nothing to worry about in my opinion. First of all, they were within normal range to begin with, just a little bit on the low side. This probably is due to the Solumedrol which suppresses the immune system. Like your doctor said we actually [U]want[/U] them to go down with Rituxan treatment. Mine are probably down to almost zero 4 months after my treatment. That’s the goal. CD2,CD4,CD8,CD56 are markers on T cells and other immune system cells. They’re probably monitoring them because of the Solumedrol to see how his immune system is doing. Other than knowing what they are I don’t know how to interpret the numbers.

Hang in there. I can imagine how tough it must be for you with a child that young. I keep thinking about our three year old granddaughter Sydney and how terrible that would be. Carol just came back last night from babysitting her in Denver. I couldn’t go with her because I’m depending on my power chair now. She told me that Sydney kept asking for me. Do you have a picture of Dell?

Hi Lori, I’m glad you posted the e-mails between you and your doctor. As far as CD19 (read B-cells) is concerned, there’s nothing to worry about in my opinion. First of all, they were within normal range to begin with, just a little bit on the low side. This probably is due to the Solumedrol which suppresses the immune system. Like your doctor said we actually [U]want[/U] them to go down with Rituxan treatment. Mine are probably down to almost zero 4 months after my treatment. That’s the goal. CD2,CD4,CD8,CD56 are markers on T cells and other immune system cells. They’re probably monitoring them because of the Solumedrol to see how his immune system is doing. Other than knowing what they are I don’t know how to interpret the numbers.

Hang there. I can imagine how tough it must be for you with a child that young. I keep thinking about our three year old granddaughter Sydney and how terrible that would be. Carol just came back last night from babysitting her in Denver. I couldn’t go with her because I’m depending on my power chair now. She told me that Sydney kept asking for me. Do you have a picture of Dell?

Hi everyone
Sorry for the time away from the forum. Thanks to Allaug and Norb for continued dialogue via email while the forum was down. After the forum came back up again I had to make a business trip and was lucky to go skiing with my family and some of my inlaws. The only trouble I experienced was tremendous pain in my toes towards the end of the day, probably from lack of use resulting from changed gait and other neuropathy related imbalance. But the pain came and went so I was able to stop now and then to let the surge subside and then continue on.

Lori
[QUOTE]Thank you for your concern for Dell. We had the 2nd treatment yesterday. All went well, actually better than first, although first wasn’t bad either, just 100.1 and a slightly elevated blood pressure towards the end of the 1st.[/QUOTE]
Glad to hear that Dell is getting the Rituxan and I sure hope it works soon. I think you are doing the right thing by asking all the questions. We are thinking of you and Dell.

Adina…thank you for sharing the story of your Mom. I know what you must have been going through because I lost my Dad last year, partly because he was sent home from hospital in a terrible condition and when he was readmitted, it was too late. Initially he was in for pneumonia, but must have suffered some mini strokes in there and was unable to swallow and his blood chemistry went crazy. But my Dad was quite a lot older than your Mom, and it does not seem fair that you lost your Mom at such a young age. Your children will appreciate the memories of their grandmother.

Norb,
[QUOTE]there have been some minor improvements since I received Rituxan treatment in October. My tongue is almost back to normal and a few days ago I noticed that I can feel the keys on the keyboard again with my fingertips.[/QUOTE]
That’s great news!! Especially to hear that you have experienced an improvement in the sensory neuropathy which is so important. I was thinking personally that I had noticed an improvement in motor neuropathy, but I could not detect any sensory changes. What is your status with regard to further treatments. Will you get more Rituxan in April?

News from today…
Do not trust anyone who tells you how wonderful the Canadian health care system is. After my neurologist refused to check my b/w for IgM levels or anti-MAG, I had a blood test today so that they can monitor my liver and bone marrow for damage from Rituxan. I asked at the clinic if they could measure IgM and IgG levels and offered to pay for it out of my pocket. Answer is that they are not allowed to run any blood tests without instructions from the doctor. Maybe I will go to a separate clinic next week while I’m in New Orleans and have the tests done there.

Take care everyone and keep getting better!!!
Andrew

Andrew,

My sister calls the places that offer walk-in service, “doc-in-the box.” Maybe you can go to one of those places. There is one in my home town that cost a flat fee of $40. The dr. is not affliated to the hospital so this is his only source of income. Can’t believe he could stay in business but he is.

I live about 1-1/2 hour from New Orleans. What are you going to do there and how long will you be there. I can’t promise anything but would love to meet you.

Norb,

Thanks for the info on the CD’s. This stuff blows my mind. If we were talking about how to make cakes and the chemistry between salt, baking powder, baking soda, I’d have no problem but baking a cake is alot easier than figuring out cidp.

As I’ve told ya’ll in the past, I am almost computer stupid so I can’t send photos. I will try my best to get a neighbor to help.

Love, Lori

Just wanted to write some things after reading Norb and Andrew’s back and forth.

Regarding flora: I give Dell a primadophilus pill every day to keep good bacteria in his system. He’s also taking zinc. The immunologist said the zinc is very important.

Andrew: Can’t remember if you go to an immuologist but if not, I’d make an appt. with one.

Regarding antibiotics: Don’t forget to get your antibiotics when doing dental work. Dell’s PT’s husband had a bone marrow transplant about 1 year ago. He has to have 2 teeth out and the surgeron did not know he should have an antibiotic. Blows my mind!!!!! Thank God they emailed their dr. at MD Anderson and they said, “of course you need an antibiotic.”

Our neuro. told us the other day, he’s hoping to kill the bad guys and when they come back, “he’s hoping they will have forgotten their memory and forget they were bad cells.”

Just wanted to put my 2 cents into the conversation.

Love, Lori

News from today…
Do not trust anyone who tells you how wonderful the Canadian health care system is. After my neurologist refused to check my b/w for IgM levels or anti-MAG, I had a blood test today so that they can monitor my liver and bone marrow for damage from Rituxan. I asked at the clinic if they could measure IgM and IgG levels and offered to pay for it out of my pocket. Answer is that they are not allowed to run any blood tests without instructions from the doctor. Maybe I will go to a separate clinic next week while I’m in New Orleans and have the tests done there.

Take care everyone and keep getting better!!!
Andrew[/QUOTE]
Hi Andrew,
We’re in Vancouver, and my husband’s neurologist gave him a requisition for Athena labs in the States to check his levels. He got it done at the local BC Biomedical lab, but we paid approximately $1200.
Laurel

I just received the results of my blood tests from Monday except the anti-MAG IgM is still outstanding. This time I created a graph to make it more visual. The results are very encouraging. The decline in antibodies is steady and IgG pretty much parallels IgM. I’m anxious to see the anti-MAG IgM number. It would have been interesting to see the numbers for B cells and T cells as is being done in Dell’s case. But it is too late to ask for it now since I don’t have a baseline.

[IMG]http://www.ourbluemarble.us/forum/IgM_IgG_Graph.jpg[/IMG]

[QUOTE=Dells mom]I live about 1-1/2 hour from New Orleans. What are you going to do there and how long will you be there. I can’t promise anything but would love to meet you.[/QUOTE]

Hi Lori
thanks for the suggestion re “doc-in-the-box”. I have looked for a New Orleans diagnostic clinic in the yellow pages and there are a few listed so once I get there I’ll make some calls….that is if I get there. We are having ANOTHER snow storm today and flights are delayed and canceled. It has gotten so that we need to shovel the snow way up in the air to get it over the banks along the driveway. What a winter!!

I will be at a conference in N.O. and it is always a really intensive week with meetings from 8 am until I go to bed (not exactly the “Big Easy”). I’d also love to meet you and hear more about Dell but to be honest, it may be quite difficult for me to get away. I’ll try to get a better reading on the situation once I get there.

Regarding the need for defense against infections, I have disregarded the words of my neurologist’s clerk. Certainly if our immune system is in any way compromised, we must take extra precautions. Several thousand years ago, man did not live in large urban centres, travel in airplanes or risk exposure to all kinds of internationally prevelant viruses and bacteria. Our immune systems have not adapted as quickly as the change in our social structures, so I believe that we need to take precautions as a general rule, and more so if we have reduced defenses. So I totally agree with you that masks are important in crowded places and one should wash hands often, especially after touching railings, etc in public places.

Back to shoveling the driveway (my new winter sport)!!
Andrew

Laurel and Andrew,

I’m sure you both think I’m crazy and you are probably correct, I read Laurel’s post and thought it was Andrew that was going to New Orleans. Anyway, Laurel, let me know about your plans to New Orleans, we are 1-1/2 hours away.

Norb,

Would it be too much trouble to tell me what page all your graphs are found on. The ones you posted from your bloodwork?

My husband sent a nasty letter to the hospital regarding waiting for 6 hours for our Rituxan treatment to START. He got a reply back and this coming week (3rd treatment) they are putting us into the infusion room where Dell used to get his ivig about 2 years ago. The nurses are wonderful and they love Dell. It will be good to be away from all the crap on the floor of the hospital.

Thanks, Lori

[QUOTE=laurel]We’re in Vancouver, and my husband’s neurologist gave him a requisition for Athena labs in the States to check his levels. He got it done at the local BC Biomedical lab, but we paid approximately $1200.
Laurel[/QUOTE]

Hi Laurel
Ouch!! Was that the anti-MAG test which drove the cost up?
Maybe if I can get a referral from my family doctor to an immunologist, as suggested by Lori, I can get it covered (outside of the treatments being prescribed by the neurologist). Gotta check all the angles.
Take care
Andrew

[QUOTE=norb]This time I created a graph to make it more visual. The results are very encouraging. The decline in antibodies is steady and IgG pretty much parallels IgM. [/QUOTE]

Fantastic Norb!!
I hope you don’t mind if l send a copy of your graph to my neurologist to show how important it is to track the correlation between the Rituxan treatment and the effect. To me, the neuropathic improvement will be a corollary of the decreased immunoglobulin levels. This is exactly the way I had hoped to follow my treatments (I guess, being an engineer, I love charts).
Norb, I sincerely look forward to the day that you post a message on the forum to say that you have dumped the power chair and have gone back to cane or better. I hope that that day is soon.
Thanks for sharing your progress.
Best regards
Andrew

[QUOTE=Dells mom]Laurel and Andrew,
thought it was Andrew that was going to New Orleans.[/QUOTE]

Hi Lori
You were right the first time. I’m headed for N.O. See my other post.
It sometimes gets confusing with the “quotes”.
Take care
Andrew

Hi Lori,
here are links directly to the place where the graph and the table are stored.

[COLOR=”Navy”]http://www.ourbluemarble.us/forum/IgM_IgG_Graph.jpg[/COLOR]

[COLOR=”Navy”]http://www.ourbluemarble.us/forum/blood_tests.jpg[/COLOR]

Andrew, of course I don’t mind if you use the graph and the table any way you see fit. With 30+ years in computing and having taught project management I like graphs and tables also. I tried to add the data for the anti-MAG IgM to the graph but it didn’t quite turn out because of the large difference in values. Interestingly enough, Excel automatically projected the two missing values but the resulting curve ended up exactly on top of the IgM one. Here is a separate graph with projected values. I will add the missing one from March sometime next week as soon as I receive it from the lab.
[IMG]http://www.ourbluemarble.us/forum/antiMAGIgM_Graph.jpg[/IMG]

Andrew,

Which post are you talking about? Maybe Dell and I could meet you in a “non-germ” place.

Lori

I have been following this thread since Allaug started it way back in May 2006! As an IgA PDN sufferer for almost 15 years I have felt to be a sort of intruder but the discussion about T cells and B cells has come together for me as my experience has taken a sharp downhill turn in the past year.

Allaug has graciously stated that she had learned from me and my website but I have been learning from her and all of you. Here is my thinking aloud. >

From my own PDN website. “Paraprotein or monoclonal gammopathy is the presence in the blood/serum of an abnormal amount of any single type of protein/antibody/immunoglobulin.
WHAT CAUSES THE PARAPROTEIN? The anti-body producing plasma cells in the bone marrow or lymphoid organs have gone out of control. They have expanded to form benign or malignant tumours. These are, so to speak, locked in an “on” position and secrete or spew out clones of the same, single antibody (or immunoglobulin). This process is known as Monoclonal Gammopathy.”

As a matter of information I had gall bladder surgery by keyhole process in mid-February 1993 and in May a small calcaneal spur removal on my left heel. On the time scale of the monoclonal gammopathy and neuropathy occurring I have sometimes wondered.

As has been said on this thread when discussing anti-MAG IgM PDN/MGUS this cloning results from one single damaged B-cell getting out of control and the cloning to create a proliferation of monoclonal antibodies over the years – in my case of IgA antibodies and since mid-June 1993. Although the pathogenesis (what happened) is not clear about IgA PDN/MGUS neuropathy it seems possible or even probable that there was an immune reaction to an antigen, possibly a bacteria, targeted by IgA rather than IgG and my peripheral nerve myelin was attacked. The havoc was limited to my feet and mainly to the sensory nerves, but over 14+ years pain has increased, greatly in very recent years, and walking has become disabled in the past 8 months being severely limited by the muscles cramping much more than previously as the motor nerves are sending chaotic messages to my feet.

As I have indicated on another recent thread there is a relationship between my IgA PDN and anti-MAG PDN/MGUS associated demyelinating neuropathy.

Some IgA PDN/MGUS associated demyelinating neuropathy sufferers ‘can show features similar to anti-MAG IgM patients’. (Cocito et al 2003.)

A joint task force of the European Federation of Neurological Societies and the Peripheral Nerve Society reported in ‘Guidelines on management of paraproteinaemic demyelinating neuropathies’ that “a minority of patients with IgG or IgA PDN have the DADS clinical phenotype (observable characteristics) and associated electrophysiological features”.

Most patients with IgM PDN have DADS clinical phenotype most strongly associated with anti-MAG antibodies. The phenotype is distal (away from the centre point of attachment), acquired demyelinating symmetrical. It is chronic, slowly progressive, symmetric, predominantly sensory involvement, relatively mild or no weakness, ataxia and often tremor.

That description is closely similar to my IgA PDN clinical and my experienced characteristics. Mainly sensory, mild or little weakness, symmetric, slowly progressive. No tremor initially but I have some now, but that could be age related – now 80+ compared with 65 at onset.

I am in mid-spell of the half life of IVIg after 5 days infusions 3 weeks ago. No significant change yet. IVIg targets the T-cells? So perhaps I need treatment targetting the rogue b-cells? It has been helpful to some of you be you anti-MAG IgM or CIDP in some cases.

Your comments please.:confused:

Hello Ken, [QUOTE=kenspdn]IVIg targets the T-cells?[/QUOTE]here is what Threads, an immunologists, wrote about IVIG a couple of years ago.* I would think what she says about IgM also applies to IgA.[QUOTE=Threads]…the mechanisms by which IVIG work aren’t fully understood. But I think this is reasonable based on what we do know….The antibodies in IVIG are primarily IgG class – that is the class of most normal serum antibodies. One action of IVIG is to downregulate Fc receptors – for the IgG class. There have been other proposed mechanisms for IVIG action and some or all might be a part of the package. But it seems that most of the mechanisms are related to the massive infusion of a lot of IgG constant regions, and are not due to specific antigen binding properties of the IVIG. You can see that it will not have the same effect on IgM specific receptors because there is not a lot of IgM class antibodies being infused.I think this is why it is important to figure out whether someone has a pathogenic IgM causing the disease (and so less likely to respond to IVIG), vs. someone with typical CIDP that happens to have a benign IgM spike in their serum.My speculation is that there are also patients where the disease doesn’t involve a lot of antibody production; that it is primarily T cell or NKT cell mediated, and that those patients are also IVIG unresponsive. The clinical literature has noted that patients with a longer course of disease tend to be less responsive to IVIG, and it may be that for typical CIDP (unlike anti-MAG IgM) the antibody component decreases over time and the T cell component becomes predominant.[/QUOTE]I created a graph for you showing depletion of my IgA. In my case it’s always been within normal range.* My suspicion is that your numbers would be quite different.
[IMG]http://www.ourbluemarble.us/forum/IgA_Graph.jpg[/IMG]

I do hope that you will see some improvement after your IVIG treatment. However to be honest, if my case is any indication, I am not very hopeful. Like you suggested, treatment targeting rogue B-cells might be a better course of action. On the other hand, every patient is different and to try IVIG first appears to be quite reasonable.
Take care.

Hello everyone,

We are at the hospital receiving Dell’s 3rd treatment. They are almost ready to plug him in. I’ll post the work when I get it back, it’s pretty quick.

Boy, there sure is a difference between the infusion room and the floor. On the floor, we would have MAYBE had his pressure and temp. done by now. In the infusion room, they’ve done everything and are ready to hook him up. It would be a couple more hours before hook up time on the floor. It’s a much nicer experience for my husband and I and also for Dell.

Love, Lori

Norb,
Thanks for that response. I was hoping for some other responses too. My submission must have been too boring.
As DocDavid wrote in his article for PRACTICAL NEUROLOGY 242 in August 2005. © 2005 Blackwell Publishing Ltd.

ME AND MY NEUROLOGICAL ILLNESS.
Chronic inflammatory demyelinating polyradiculoneuropathy
responding to Rituximab.

“A search of the web brought me to two sites [url]http://www.gbsfi[/url] .com and http:// [url]www.gbs.org.uk[/url] on which there are many expert patients and a wealth of knowledge.”

Along with him I have always found great help on these forums.

We got some of Dell’s b/w but not the CD’s.

WBC 3.5 low range 5.-15.5
Seg neutrophils 66.00 high normal range 23.0-54%
Platelet Count 471 high normal 150-400

Sed rate 35 high, normal 0-15
sed has been high for the last few times

Everyone,
Did your wbc go down? I’m concerned with that.

Write when you can, I’m waiting to hear about your wbc.
Thanks, Lori

I did find the white blood count results. The infu sion Center did their own tests.

According to them the normal range is 4.0 to 10.0

Before the infusions: 4.5
after first infusion: not done
after second infusion: 5.3
after the third infusion : 4.9
after the fourth infusion 5.1

They did lymphocytes separately which includes just B and T cells

Normal range is 1 to 4.4

Before the infusions: not done
after first infusion: not done
after second infusion: 1.4
after the third infusion : 1.2
after the fourth infusion: 1.2

Do you know what Dell’s WBC was before he started infusions?

As I told you on the phone earlier, his WBC is not dramatically low, in my opinion. A drop is to be expected after Rituxan. I’m surprised that mine didn’t drop.

He will be fine. Take care

Last night, after we talked, I looked at the info we printed from the computer on [url]www.drugs.com[/url] for Rituxan.

Under Less common, “this medicine may also cause the following side effects that your doctor will watch for:
High blood pressure; low white blood cell count

I called the mother of the 17 year old our dr. prescribed Rituxan for lupus and RA. Her wbc was not affected.

His wbc count on 2/29/08 was 9.8, normal (5-15.5). It’s always in that range.

We do ivig next week and I’m going to write dr. today to ask if we can do it earlier in the week rather than wait for Friday. Don’t you think ivig would help the wbc????

Thanks,
Lori

Lori,
the IVIG will give him extra protection against infections but it will not affect his WBC. This is a count of his immune system cells while IVIG does not consist of cells but antibodies. Antibodies are proteins. Since Rituxan reduces B cells significantly, the antibodies produced by them will also be reduced. IVIG replaces what is lost.

You can see how my antibodies went down if you look at the chart I published.

Carol and I are thinking of you and Dell all the time.

Take care

I finally received the results of the anti-MAG IgM test for March. At first I was disappointed because it looked like the number went back up to 15.12 (see graph posted 3/8). But then I realized results came from two different labs. Now I consider the data as inconclusive.

I am scheduled for my second series of Rituxan starting April 18.

Norb,

I spoke with the immuoloigist today. I was going to fax results but he was leaving to go out of town.

He said the same thing you did about the ivig not working to help pull up the WBC. He also said as long as Dell’s acs numbers were above 1000, he felt everything would be ok. The acs numbers are the ones to tell if a patient is neuropenic (spelling). Dell’s is 2310.

I have been on the computer all morning to make heads or tails of all this. Sorry to hear your numbers were not what you wanted but you are right about the different labs doing the work.

Don’t you want to get a prescription pad and write your own testing. I hate having to go through a dr.

Love, Lori
P.S. Thanks for your prayers.

Hi all
Made it home last night from New Orleans. Before leaving, I took a taxi ride around some of the neighbourhoods that were so badly affected by Katrina. It was a shock to say the least. So many homes totally gone leaving only the concrete slab on grade. So many lives lost that were never counted. So many lives ruined. It was sad. It was also eerie, like a sci-fi movie to see the streets and the curbs, with driveways but only a few houses dotted here and there, mostly brick houses that were too heavy to float away. Painted information on the fronts of the remaining houses tell the number of dead found in the house out of how many total. Some of the remaining houses are occupied, but many are in a state of ruin with clothing and lampshades and things lying outside. You won’t see that that in downtown New Orleans where it looks like it always did, but out in the residential areas on the East side, the real effect of Katrina can be seen. Clearly more money is needed there to help the rebuilding process.

Lori, I saw that Dell had his third treatment and it sounds like it went well. That’s good to hear.

Norb, I agree that you should not put much faith in the level of the anti-MAG measured in your last test. Especially since there are a couple of different tests (Western Blot and Elisa). I tried to find information on standard deviation of anti-MAG measurements, but was not too successful. But I did discover that Rituxan is called MabThera outside the USA and a search on MabThera can bring some interesting information. For example, among other things I found a chart showing different types of NHL at the Mabtherea.com website. I tried to attach it but without success.

Also, I actually just downloaded the Oxford Handbook of Clinical Haematology from [url]http://docs.ksu.edu.sa/PDF/Articles34/Article340851.pdf[/url] Lori, you might find some answers in it to questions about bloodwork.

I still don’t have a date yet for my next Rituxan treatment. Yours is coming up soon, eh Norb! That’s great. You’ll soon be running.

Take care all
Andrew

Norb,
We were talking a while ago about the book by P. Dyck regarding measurement of degree of neuropathy. I finally made it through the chapter “Quantitating Severity of Neuropathy” which I sent you and actually found it quite interesting once I was able to grasp the terminology. I jotted down a few take-aways and I’ve listed them below.
• A change in the NDS score of 2 or more is considered significant. This seems important because there are so many measurements involved in the scoring and a 2 point movement found among all the measurements would seem quite possible (higher or lower depending on circumstances)
• VDT (vibration detection threshold) is a useful measurement, especially for repeatability for any given patient.
• NDS scoring is useful in the case of group studies due to the reproducibility and consistency between scorers.
• Nerve conduction (NC) can be effected by carpal tunnel syndrome, etc. and as a result, care should be exercised in evaluating results across a group (lack of consistency between scorers)
For me personally:
• Hypoactivity symptoms are much greater than hyperactivity symptoms. In other words, I have numbness and weakness as opposed to spasms, cramps, burning, prickling, etc. I think you are the same.
• NC test and VDT give a good quantitative evaluation – useful for measuring degree of change (progress/decline)
• Qualitative tests include reflexes, great toe joint position, cotton swab and pin *****. All show current neuropathy and a change in any one would be significant.
• Have Stage 2 – symptomatic neuropathy.
Andrew

Andrew,

I live in Biloxi and we have rebounded much better than LA but when you drive down our once beautiful beach, it is very depressing. Antebellum homes were washed away and can never be replaced. Hardly any food businesses have returned. Don’t know what they are all waiting for. It was such a thriving area before the storm.

Can’t remember what I wrote about Dell’s 3rd treatment but we are glad it’s over with. In the 4th hour, after his temp. went up a little, the blood pressure went crazy. The bottom number at one time was in the 30’s. The nurse took it every 5-10 mins.

After we received the news of the WBC being so low, the dr. has decided there will be no 4th treatment and I am happy with that. This is such a scary thing for us. I thought the 1st and 2nd were supposed to be the bad ones but the 3rd was the worst for us.

I’m being nosy but what did you do in New Orleans? My mom goes there every month for a treatment of Orencia for her RA, at Ochners.

Love, Lori

Hi Lori
Again sorry that I could not get in touch with you while in New Orleans. I had a tough time getting there due to snow storms here in Toronto, and ended up flying from Buffalo on Monday instead of Saturday. Consequently I had to squeeze a lot into the 3 days I was there. I didn’t even try to go to a clinic. I was at a conference and we had meetings all day every day so there was very little time to relax. I only had my tour of the flooded areas while on the way to the airport.

My goodness, I am also sorry that I missed your reports on how Dell’s third Rituxan treatment went. That is really scary, especially after things had gone well for the first three hours. I agree with your relief that the doctor has cancelled the fourth treatment.

While in N.O., in the meantime, I heard from my neurologist regarding my request for IgM and anti-MAG measurements. The reply was that there is no correlation between these measurements and my disease. Now I’m wondering what disease I actually have…or why an increase/decrease in anti-MAG would not have a direct bearing on increased/decreased nerve damage. Also, Lauel’s posting about the cost for this test made me wonder whether I shouldn’t keep trying to get it done under our medical system. So I have been working on that line of reasoning.

I hope that Dell’s treatments show positive results quickly. I am very optimistic about Rituxan as are Allaug and Norb. One would have to think that the three treatments would be enough for Dell given that he is not nearly as heavy as I am (gotta get working on that problem).

Have a nice weekend. It’s sunny here but there is still a lot of snow.
Andrew

[QUOTE=Andrew]
Norb, I agree that you should not put much faith in the level of the anti-MAG measured in your last test. Especially since there are a couple of different tests (Western Blot and Elisa). I tried to find information on standard deviation of anti-MAG measurements, but was not too successful.[/QUOTE]
According to the lab reports both labs, Focus Technologies in California and Mayo used Elisa and Western blot for confirmation. In November I called Focus to find out how I could relate the index number to the absolute number I received from the Washington University lab in St. Louis two years ago. I did not get an answer. However when I asked about the method used to determine their numbers they told me they are using optical density. I recalled the research work I did 10 years ago in the biology lab at the college where I used to work. I used a spectrophotometer for the measurement. First I established a reference chart which I used later to read off the amount of protein found in different liquids. I did this twice and came up with different numbers every time so I used the averages to establish the reference chart. Perhaps this happened because I was no expert. On the other hand, it may be difficult for anybody to do procedures like that accurately. This may indicate a certain unreliability in the numbers I received for the anti-MAG IgM. Here a link to the research I did then:
[COLOR=”Navy”]http://www.ourbluemarble.us/Norbert/kombucha/Research/research.htm[/COLOR]

[QUOTE]I did discover that Rituxan is called MabThera outside the USA and a search on MabThera can bring some interesting information. For example, among other things I found a chart showing different types of NHL at the Mabtherea.com website. I tried to attach it but without success.[/QUOTE]
I knew about MabThera from my friend in Switzerland but have not done any searches on it. The NHL pie chart did come through as an attachment. Thank you. I fall into the “Other” category, none of the others fit me. The diagnostic code my oncologist used also indicated “Other” which was sufficient to qualify for Rituxan.

I’ll react to your other post about quantification at a later time.

Take care

This is a pretty exciting post for me because, as far as I can see, after 100 posts, one becomes a senior member. That sounds so much more knowledgable and important than just “member”.
The topic for my 100th post is “dirty language”.
I got a big laugh when I looked back at a previous email I had posted talking about neurological tests including one where they poke you with a pin. Not surprisingly, this test is called the “p i n p r i c k” test. The internet decided that I was using a dirty word and changed the phrase to “pin *****”.
My apologies to anyone who would be offended by the pr word. I was using the version from the Oxford English Dictionary. Not the one normally reserved to describe one’s boss!!
Have a great weekend and hi to all the senior members!!
Andrew

OK Mr. Senior Member, that was funny! Congratulations….

Andrew, welcome to the exclusive expert club of senior members. 😀 When I noticed the ***** I thought to myself “wow is he ever discrete.”

Thanks Gabrielle and Norb!
It feels great to be a senoir member. I had to ***** myself with a pin this morning to make sure I’m not dreaming.
Have a nice day
Andrew

I am a care taker for my husband and I have been reading some old threads from 2006 regarding qualifications in order to receive rituxan.

My husband is receiving prednasone and imuran. He has cidp. Not doing well on it. What is antimag igm or monoclonal gammopathy. Everything seems to refer to these things in order to get retuxan. How do we know if we qualify. I know it is not fda approved and I believe only a oncologist can order it. My husband is going to see one next week. Our family doctor is refering.

He is also going to see a wound specialist as his nerve bioposy is now causing an infection . The swelling in his feet has opened it up. The nero told the practicianer to start getting him off the prednasone and stop imuran for one week followed by blood test. His balance is terrible. I am sure from the meds. sweats, dizziness and falling even with a cane. This all happened since on meds.
Doc says he has a severe case. His first protocal is what he is on. We wanted ivig but after he told us Medicare will not pay for it if he does it as an inpatient. Only as outpatient but first times doing this he needs to be in hospital. He is retired and started on Medicare about two years ago. Is there anyone who had ivig in hospital and refused by medicare on payment? please let me know from as many of you as possible.

Thanks
Joanf

Joan,

You need to post the question regarding medicaid paying for his ivig on another post. You will get more ppl. seeing it there.

Your husband needs to go through ivig before they talk about Rituxan. I still can’t believe that stupid doctor did not give him ivig. (I’ve talked to Joan on the phone a few times). The first thing you need to do is get rid of that dr. Then, find a way to get him ivig. That is my opinion.

Good luck,
Lori

Joan, anti-MAG IgM or MGUS did not qualify me for Rituxan. It is only approved by the FDA for non-Hodgkin’s lymphoma and rheumatoid arthritis. However, there currently are studies going on for anti-MAG IgM patients with MGUS at Mayo Clinic. Since monoclonal antibodies may point to an underlying lymphoma, I insisted that my oncologist look for it. He did a bone biopsy and did in fact find some indication of a low-grade lymphoma. As a result I got the Rituxan last October. There are some CIDP patients here on the forum who received Rituxan without this kind of diagnosis. It probably was a case where their doctor was willing to convince the insurance company that it was medically necessary and other treatments failed.

To the best of my knowledge, as far as IVIG is concerned Medicare requires that it is administered at an infusion center on an outpatient basis and not at home. This could be at a hospital or a related facility. Medicare is administered on a regional basis and decisions are not always identical from area to area- at least that’s what it seems judging from some of the posts here some time ago. Medicare in this region never presented any problems for me.

Two years ago my neurologist prescribed prednisone for me to give it a try. She increased it over a short period of time to 80 mg. Two weeks after that I lost control over my legs, lost my balance and had shooting pains all the way up to my neck. I had to start using a rollator to move around. We stopped prednisone right away over a week and everything improved again. Well, it started going downhill again a year later. Now I’m waiting for results from the Rituxan.

Carol, my wife, wants me to tell you that her heart goes out to you. She knows how difficult it can be as a caregiver. She recently contacted the local county office on aging and found out about services and support groups available for caregivers. She suggests maybe there is something similar in your area.

Joan
Sorry to hear about your husband’s condition. The loss of balance and loss of feeling can be a scary thing. It is all caused by damage to nerves including the proprioceptors which are nerves which provide feedback to the brain as to the position of the muscle. This of course includes muscles in the toes which tell the brain how much pressure is being applied so that the brain can respond by altering body position, etc. The wiring on these machines (called the “human body”) is incredibly complex, and indeed a marvel. But you don’t realize what is happening in the background until something goes wrong.
The damage to nerves can be caused by anti-MAG (anti-myelin associated glycoprotein) which is an antibody which is directed toward the myelin sheath surrounding the nerves. This is more predominant in IgM MGUS than other types of MGUS, but not necessarily exclusive.
Regarding coverage, I cannot speak for the USA as I am in Canada, but the similarity between countries regarding drug coverage is significant. For MGUS there is no allowance for coverage of treatment with Rituxan because it is still considered experimental (despite numerous studies and success stories). I personally had to pay for it out of my pocket because I did not want to risk waiting any longer to fight the insurance companies or government. I am doing this separately. But Rituxan is covered for some other health issues like Rheumatoid arthritis and non-Hodgkins lymphoma as mentioned by Norb.
So coverage in your husband’s case may not be out of the question.
There is no guarantee that Rituxan will work for your husband, and it depends on the real diagnosis. Perhaps he should be given a combination of Rituxan and other medication, as has shown success with others. But again, it really depends on what they can find with the blood tests, etc.
One personal thought is that the imbalance and other abnormalities seem worse when the feet are swollen which generally happens to me later in the day but may be all the time with your husband because of his medication.
Sorry if I rambled a bit in this posting. I sure hope that your doctors can pull their act together and get a proper diagnosis and the appropriate treatment. This GBS/CIPD/MGUS is an awful disease because it involves three systems – immunology, hematology and neurology. The experts in one field don’t necessarily understand the other fields. I think that is why there are so many really smart people in this forum – because they are forced to learn about all three in order to understand what is happening.
We are hoping the best for your husband and continued strength for you as the caregiver.
Andrew

Joan,

I will start a Medicare thread on the main page with some information that may give a starting point to finding detailed coverage from your state carrier. It will also give others here a central place to share their experiences. Hope it helps in obtaining appropriate treatment for your husband.

As far as ivig, medicare does cover it as inpatient (here in Texas, my daughter had many inpatient treatments which they eventually paid) – is the hospital an approved medicare provider?

best wishes
cd

[QUOTE=compactdisc]I will start a Medicare thread on the main page with some information that may give a starting point to finding detailed coverage from your state carrier. [/QUOTE]
great idea, thanks

When 9 days ago I posted [QUOTE]An IgA PDNer thinking forum aloud.
[/QUOTE] I said that I was at mid-point after 5 days of IVIG infusions with no significant change. That is still the case in the 4th week. Somehow I did get more mental energy and stamina than for many months as previously I had reached the stage of being exhausted by ever present pain and the tightness and numbness in my feet.
15 years since it all started. Now I need a cyber discussion with my neuro about what next.:o

Norb and others have been posting on the General Questions forum under MGUS.
I have posted this there but thought it deserved being posted here also:

[QUOTE]Just to add to the stock of knowledge of MGUS associated neuropathy that is now known in Europe as Paraproteinaemic Demyelinating Neuropathy – PDN.

In 2006 the European Federation of Neurological Societies and the Peripheral Nerve Society published a report of a joint task force on the management of the PDNs.

You can read the whole of it on a pdf at [url]http://pns.ucsd.edu/Guidelines_paraproteinemic_neuropathy.pdf[/url]
Plenty to read there[/QUOTE];)

Ken
Thanks for posting the link to that report on recommendations from the various studies. I will add this to my collection of important papers as I prepare for a meeting next month with my neurologist to discuss treatment and the monitoring (or not monitoring) of results.
Regards
Andrew

thanks for the web site. I have the IgM spike and this has a lot of info that i need to cover with the MD.

Hello to all our Rituxan friends,

Please look on the main forum for our news of the day. I am so tired right now but want to do more research and Dell is getting a solumedrol treatment at 10:30 p.m. so there is no reason to lay down for 1 hour, just to get up again.

I don’t guess any of you can be Rituxan experts and CD4 experts, huh?

Thanks for being there when we all need eachother.
Love, Lori

Hello Allaug,
I too have been asking all my doctors about this course of treatment, since T have heard of the recoveries reported here.It is true that to get Rituxan, you go to an oncologist, or an internist for treatment. I have found a Dr. who is very interested in working with me, but because I have had so many allergic reactions to all the brands of IVIG except for one, we are waiting until that one too starts to fail, and I have no other options. The reason being, there is a 2 year wait to get on IVIG treatment here! But apparently, if you get your neurologist,g.p. and an internist to work on it, it can be done. I get my infusions done at the outpatient oncology unit at the hospital, so the cancer docs are all over… My hands are killing me, I’ve got to go, but keep me posted on your progress.
Best wishes, Jo Marie

My mom got three treatments of Rituxan at Cleveland Clinic if that helps any of you. Relapsing/remitting CIDP They had tried everything she was on IVIG(at one point she was on it 1X a week), Plasma Pheresis, Cellcept, steroids and so on I don’t know if they hold the Rituxan till last resort & see if anything else works because I did hear one thing about it quite alot I kept hearing how expensive it is!

Please look on my post on the main section. All of Dell’s problems were port related.

Also, his CD 19 numbers are “non detectable” so that is good.

Love, Lori

I know that this question is not directly relevant to Rituxan treatment in itself.
Has anyone amongst the MGUS neuropathy/PDN ‘posters’ on this forum come across any information as to the incidence and prevalence of this form of neuropathy?
It may be that such informtion will be very difficult to gather. It may depend on how cases are reported.:confused:

To all my Rituxan friends,

This week, the neuro. allowed me to wean Dell off of some Solumedrol. He gets 4 bottles, 6 hours apart and the dr. said I could give him 3 and throw the other away.

I don’t think this is because of Rituxan but we saw him walk ALL OVER MY MOM’S HOUSE. She has a wood floor and we have tiles, don’t know if that makes a difference to him. Also, they pay him to walk which is a great incentive, we don’t pay at home.

I left him for about 1 hour at their house. When I got back, they told him to walk. He walked the perimiter of the kitchen, without holding on and also walked the living room. There is a very small step up from the living room (where they added on) and he was able to walk up it very slowly, without holding on.

He is very wobbly and slow, but I’ll take that over not walking. Only time will tell regarding how good he gets at walking. When he puts his feet down, it’s not very graceful so I have many questins for the PT. Soon, he will be getting a new walker, one with a seat and all terrain wheels.

I will get the bloodwork numbers for you all on Monday but since the port problem, all the ones we did when the Rituxan was started are not correct. The only “good ones” I have to compare are the ones from Feb, 07.

Love to you all,
Lori