I did Rituxan. Eric Vance was on it for years, and passed away after getting an infection which he could not fight.. Jphn C. was on it for years an it quit helping him. I was on it for a year and a half and am in remission (see thread I got some Rituxan and) Most of my problems with it was a sore throat I was warned to stay away from people that were ill, and immediately seek help anytime I felt sick.
Keep the faith.
I do follow your posts, more so now because a friend I knew in New York is supposed to be starting rituxan. Tony is not on the forum. I’ve tried to get him to join but I think he doesn’t because typing and writing are really hard for him. He needs friends.
Tony is very severely damaged by CIDP and I’m wondering if it will help him at all.
Didn’t I tell you that you have to come off prednisone very slowly!!! My doctor did it so slow that it took a year with good results. The first attempt was being done too fast and doctor kept me on pred. until I could be withdrawn again. The first thing I noticed by looking at pictures of me was my moon face was gone.
I don’t pop in too often, but I’ve been following. I wish I remembered what I felt when I was withdrawing from prednisone, but my mind has put up a block, it just doesn’t want to allow me to remember. I do have a written record of the way I was withdrawn though and I do know it took almost a year to get me off. I had terrible stomach problems when on prednisone, heartburn, gerd, developed bleeding ulcers. But once the pred. stopped the stomach problems ended and the ulcers are easy to control.
Don’t know how much I can help because it was eight years ago that I came off prednisone and the mind seems to put up a block on me so I don’t remember those things anymore. I do know that it didn’t work during the first try and I had to stay on pred. and when the second try was started my doctor withdrew me very slowly. It took almost a year before I was completely off. Prednisone caused me a lot of stomach problems and that became much better AND once I was off prednisone, I lost the moon face.
My advice, if the first try doesn’t work, try again at a much slower pace.
Ken, I know that you do not feel that the Rituxan will do anything, but it is a very strong immunosuppressant. Yes, it does not work for everyone, but it does help/work for some people. It is a very strong B cell immunosuppressant. The problem is that some autoimmune diseases have B and T cell contributions and some predominantly T cell as well as those that are predominantly B cell mediated. There are two reasons that it is worth doing rituxan EVEN if you do proceed to a stem cell transplant–first, it is a strong immunosuppressant and could potentially work with the stem cell transplant to increase the chance of success because it works in a different way than stem cell transplantation. When Rituxan first came out, people worried about stem cell transplant on top of using this drug, but it has been done now in lots of people with lymphomas and B cell leukemia, so the two can be used in overlapping periods of time. Second, the four to six months period of time off of cytoxan HOPEFULLY will allow your body to heal a little more and be stronger if then you were going to look further into a stem cell transplant so that this potential option would be safer for you. In other words, so even if Rituxamib is not a “home run”, it may be a force to hold the disease in check while your body heals and gets stronger for the next treatment and may be supplemental or complementary to that other treatment.
As a medical professional, I feel it is important to say that there is a lot more information about rituxan being used in CIDP than stem cell transplantation and most people (outside of Chicago) would consider it higher on the list of possible effective therapies because it has been used more for autoimmune diseases and has been used longer and at more places. Stem cell transplantation is new and exciting, but NEW is an important word to remember at the same time as the exciting part. Medical people like things with a track record, even if not absolutely positive while trying also to get a track record for that which is new and exciting.
My purpose to write is to be encouraging and to say that even if you are frustrated with the decision to do the Rituxan, this may be beneficial in the long-term to ensure that your immune system is completely reset and stays that way. I hope this for you, knowing that you have a particularly “bad” case. I do not want to rain on anyone’s parade about stem cell transplantation or rituximab. It is important to remember that rituximab takes a while to show up as improvement–typically manifesting as no added damage accumulating while the body heals–it is not really a dramatic drug, but it can still WORK. If the damage is stopped and stays stopped, that is the important point. There are cancer treatments that are really intense and hard on people and on the cancer. For some people, they may not work whereas slower acting treatments given persistently may work. One day we may know the best way to treat each person’s CIDP, but for now, it is important to think broadly–knowing that some things do work for some people and not others and other things work in those cases but not necessarily in the first subset. I hope that this makes sense.
WithHope for a cure of these diseases.
Soapy, I missed your birthday. Is the excuse that I’ve been busy since the 6th good enough, friend visiting, handyman doing work for me, getting papers together for IRS, etc. My fatigue can drain me.
It sounds like you do not yet have a firm diagnosis as to what the problem is. Rituxan works by targeting the B-cells because they carry a CD20 marker. My understanding is that it tends to work well on patients with IgM MGUS because it is one of the B-cells that is cloning the anti-MAG that attacks the nerves. However, I am not sure that it works so well with CIDP. For CIDP they tend to prescribe IVIG – which conversely does not do anything against IgM MGUS.
Having said all that, I know that they prescribe Rituxan for arthritis, so maybe it will work in your case against fibromyalgia. I don’t know.
Rituxan is given like a chemo drug, by infusion, but it is not a chemo drug. The only side effect I know of is possible reaction to it early in the injection. But the clinic administering the drug will usually be able to detect any reaction and adjust the rate of treatment accordingly. They will usually give solumedrol etc along with the Rituxan in order to limit the reaction to the Rituxan. For me, I was wiped out for the rest of the day, but only from the Solumedrol. The next day I was fine.
It will take some time after treatment to know whether it is working or not. I sure hope that it does!!
Good luck Sandila
Glad you made it through that 1st treatment. Sounded rough.
I watched my mother take a couple doses of that stuff and it kicked
her Butt. The first one was the worst for her. The Chemo Nurse and the
Doctor both told us that the first treatment usually is the worst for the
patient because the Drug does most its work taking out the specific cells
and what you feel is the body dealing with major changes.
It worked Super fast on Mom and helped her alot. She had a huge B cell
lymphoma in her neck and within 24 hrs it visibly reduced it by 50%.
Rituxan is Very Strong. I hope you do Well. Happy Thanksgiving. tim
I can’t tell you how much I appreciate the explanation you posted. This helps me (and others I am sure) to understand why Rituxan works better with some than with others.
I’ve read your post several times now, and will do so a few more times so that I can digest what it means in my case specifically and for others as well.
I did not have the rituxan treatment, I had the cytoxan infusions for 9 months to wipe out my immune system. I guess they were trying to get rid of the bad antibodies that were destroying my immune system & then allow it to reboot. Anyways, I think the idea behind both treatments is basically the same.
I ended treatments in Sept of 2003 & by Christmas I could feel more strength in my arms in legs. But it took until the following summer for me to actually get into rehab & try walking. That summer my hand improvement also began to happen. What I am saying is that it takes some time for the nerves to heal once treatments have been initiated, and I continued to see minor improvements for the first two years after my chemo ended. I hope it works the same for those of you on rituxan…
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.
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.
[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.
[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!!!
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.
[QUOTE=connie connor]i also had the rituxan treatment but it was no help.[/QUOTE]
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.
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
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.
Aren’t they cute?? 😀
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).
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…
I’ve been treated with rituxan twice and 1 round of cytoxan also along with the ivig treatment every two weeks i have now gone 4 weeks without ivig but I am getting weak this week. my condition only improved as far as length between rounds of ivig . I have also taken cellcept, taboxen and my last oral try methotrexate. I’m feeling sorry for myself today, sorry. I always have hope that right around the corner…..
I didn’t have rituxan, instead my neuro chose to use massive doses of chemotherapy (cytoxan) to wipe out my immune system & arrest my CIDP. But, as stated above, these types of protocols are only used for the most severe & progressive forms of CIDP. I was warned that I would have a higher risk of getting leukemia 20 years down the road, that I was lose my hair, & might feel sick. But when one has been unable to walk, raise my arms, & use my hands hardly at all for 2 1/2 years, I went for quality of life. That was 3 years ago & I feel like I made the right decision. I now can walk, drive, cook, gocery shop, basically enjoy life. If there was only a treatment to end this fatigue, as that remains my biggest complaint.
Julia, I have progressive CIDP for 6 years now. I had had the usual treatments plus, cyclosporin, mycophenolate, steroids at 100mg daily all to no avail. I could not stand, toilet, wash ,nor feed myself, I transferred with a sliding board. My daughter’s wedding was six months away, she wanted me to walk her down the aisle.
I was offered Rituxan and accepted, I was already in renal failure on dialysis. The major side effect is anaphylactic shock with risk of death resulting, I did not mind that. It is recommended that the crash trolley is standing by. I had oral paracetamol and I/V hydrocortisone and I/V antihistamine to reduce side effect risk. I had a series of seven weekly infusions at £1,500 per infusion. Thank god for the NHS. I could then stand, and attend to my self care. With a stick in one hand my daughter on the other, both of us in tears, I walked my daughter down the, albeit short, aisle.
A year later I had another course of four infusions with no further benefit. DocDavid
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.
I have not heard from them lately and can only hope the improved suffiently to leave the forum. DocDavid
John and Kevin,
It’s just too weird that we are all so close together and have CIDP! My guess is all the gunk in the cumberland river since TN is so environmentally friendly (NOT!). Yup, gotta be the cumberland punch we get out of our spigots!
Anyway, the 2 june 2006 infusion went well and believe it or not, I drove 12+ hours down to Walt Disney World on 3 june 2006.
We did allot last week at WDW and I do have increased tingling in my fingers and my feet are getting more numb again. I think this is due to last week and my not being used to so much physical activity.
However, can you believe I was able to drive almost 13 hours! We took short breaks allong the way, but mostly plowed on through. Then, on 11 june 2006 I drove back up here from WDW and today I’m not feeling too tired. It’s 11pm and I’m still up and the boy had a baseball game tonight at 7:30pm and I was on my feet for about 2 hours straight! yee haw!
I guess my answer is the rituxan is kicking major butt! Dr. U wants to decrease my ivig frequency back to once every 2 weeks and I’m terrified of doing it! I wouldn’t let him cut back until after the WDW vacation last week and I don’t see him again until 18 july 2006; so I’m not sure I’ll call him and ask about cutting back on the ivig or not? What do y’all think?
The band should be Soapy and the Crips. whatchathunk? Where can I get me one of those gripmasters locally? or are they only available thru the web site?
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
I can’t begin to tell you what joy I receive in your posts. To hear what you have gotten back is nothing short of a miracle. I am also very happy where I am at physically, now if I could just get rid of this fatigue! If I just listen to my body & take even a one hour “power nap” each day, what a difference that makes. Please do keep us posted on each new achievement. It is so uplifting for those still going through dark days.