AnonymousJuly 29, 2006 at 10:21 am
we had this thread on the old forum so i thought I’d restart it. i sure wish i would have kept all of my previous posts on this subject, but alas, they were vaporized with so much good information. Let’s start this over and y’all can repost whatever you remember from before.
After over a year of fighting with the insurance company, I was finally approved to receive Rituxan.
During that time, I was made aware of the Single Point Of Reimbursement program offered by Genentech, the company who manufactures Rituxan. This program requires some qualifications concerning patient income, status of clinical trials/research of the drug, and a couple others i don’t remember of hand. However, the way the program works is that if you qualify, Genentech basically gives the Doctors Office the amount of Rituxan required for the patient concerned.
As I stated on the last forum, mysteriously, a few days after I was approved for the SPOC program i received a letter from Blue Cross Blue Shield stating i was approved for the Rituxan. I find it curious as to why this timing but haven’t spent much time dwelling on the problem. OK, back to the story:
We began the Rituxan infusions in the middle of August 2005. The initial course was one infusion per week for four weeks. My calculated level of Rituxan is 800mg (I think it’s mg and not g). The first infusion was given in two separate infusions. 100mg the first day to see if there would be any adverse reactions, and the remaining 700mg the next day while ramping the speed of infusion up to 400mg/hour.
I had absolutely no reactions what so ever! 🙂 finally I’m in a majority!
Let me backtrack just a little. At the time, I was taking 40g IVIG twice weekly and getting slightly, almost imperceptibly weaker each moth. In other words, IVIG seemed to be losing effect for me.
Upon beginning the Rituxan treatments, we completely halted the IVIG. Two weeks into the 4 weeks of initial Rituxan infusions I was in a terrible tailspin symptom-wise. I became weak enough to become completely dependent upon my power wheelchair at which time we decided to resume IVIG once weekly to try and arrest my rapid decline.
The decline was slowed but by the time the initial 4 rituxan infusions were completed, i was extremely disappointed because I was so weak and had lost so much ground AND I was only on IVIG once weekly instead of the twice weekly regimen prior to Rituxan.
I had a scheduled appointment with my Neurologist at the end of September, which was 2 weeks out from the last Rituxan infusion. I was still in pretty sad shape and we decided that the Rituxan was of no benefit and I was put on a new IVIG schedule: 3 IVIG infusions every 2 weeks. I was very disappointed because I did not believe I would get any better unless we went back to IVIG twice weekly like before Rituxan.
Another 2 weeks went by, so we were 4 weeks after the last Rituxan infusion, putting this episode around mid-October. I happened to notice that I my decline had either halted or slowed dramatically.
Just before the holidays of 2005, I noticed that my legs were extremely stronger. I still had numb/painful feet and my hands were a little better, but still numb. I was feeling numbness in “blotches” all over my arms and legs. Even with all of this, my legs were remarkably stronger. I called the Neurologists office and we began the process of contacting the Oncologist and getting me on a Rituxan maintenance plan!
December 2, 2005 I began getting Rituxan every 2 months. The holidays were great, I was allot stronger (though weak in comparison to normal folks) and able to enjoy engaging in more activities that I had been able to in a long time.
Early February, early April, and early June Rituxan infusions have seen a steady increase in my strength and now my numbness and pain. typically, 10 to 14 days post infusion I begin to notice increase in strength marked by the ability to do something easily that has been labor some in the past. After the June infusion we went to Disney World for a week and I drove to and fro 13 hours. And last week I was able to lift trash bags and set them into the chest-high trash bin with each arm – indicating that strength is now returning to my deltoid muscles in the shoulder area.
Some time earlier this year, we reduced the IVIG infusions from 3 times every 2 weeks down to once weekly. This past Wednesday, July 26, 2006 was my last weekly IVIG infusion. We are reducing the frequency to every other week. Very frightening to say the least.
I just took another Rituxan infusion on Friday, July 28, 2006. This is the first time I have noticed being really tired post infusion. Not sure why that is, but I’ll keep posting on this thread as things change so we can rebuild our Rituxan information.
Anyone else who has had Rituxan, pleas feel free to post your experiences here as well.
AnonymousJuly 31, 2006 at 4:10 pm
I don’t know about what kind of CIDP I have in as much as I have never been given any other term than CIDP for my diagnosis. For a long time, I thought I was relapsing, but recently I have come to realize mine must be progressive. It does get worse if I catch a cold or flu, but over the past 8 years each therapy has worked great, then lost effectiveness. I really don’t know which category I fall into. (no pun intended) 😀
AnonymousJuly 31, 2006 at 5:28 pm
I have the progressive kind of CIDP and have found that IVIG, now every 2 weeks, doesn’t help as much as before. My neuro wants me to stay on Cellcept for another 6 months or so before trying anything else. After the first three months on Cellcept, all of a sudden my CIDP has stopped getting worse and seems a bit better.
I am interested in Rituxen because, like you, I’ve found the other treatments helped a lot for a while and then seemed to become less effective.
I can walk and stand, just not for long. The neuro thinks Rituxen should be reserved for patients with worse problems than I have.
Please keep us all posted on your progress!
AnonymousAugust 1, 2006 at 10:23 am
I can walk and stand, just not for long. The neuro thinks Rituxen should be reserved for patients with worse problems than I have.
Sharon, not only that but Rituxan is only approved by the FDA for nonHodgkin’s Lymphoma and other cancerous blood conditions. It is not approved for CIDP. Nevertheless, there are a number of CIDP patients like Eric who managed to get it.
Here in Colorado only oncologists can prescribe it. I have a CIDP variant called antiMAG IgM neuropathy, also known as PDN. It progresses very slowly, usually mostly sensory. It responds poorly to IVIG, PP or steroids. Rituxan has shown to be effective against it. I saw an oncologist earlier this year but he could not find any cancer. So he didn’t prescribe it.
I checked out the SPOR program through which Eric got Rituxan. The way I understand it I would first have to find a doctor willing to prescribe without proof of coverage. Then Genentech, the manufacturer of Rituxan, assists in convincing the insurance company to take over the cost. I could not find any information that Genentech would actually pay the doctor directly. Maybe they will if the insurance company refuses to accept the claim. What is complicating my case is that I am on Medicare. Being a government agency they probably will go by FDA rules.
Somtimes I wonder if the neurologist and oncologist think my case is not severe enough — yet or that I am too old. I am 73, long retired and of little use to the economy. The oncologist also made comments about another patient who decided he was too old, still able to get around and was just not interested to mess with all kinds of treatments. I didn’t react to that. Well, I do get around, use a rollator a lot but also walk around the house without support, IVIG helped a bit, but numbness has now progressed up my legs and spread from fingers to the entire palm. There is some weakness in my legs, they feel sore most of the time. I am afraid that eventually I end up in a wheelchair. Maybe then I might be considered worthy of Rituxan.
AnonymousAugust 1, 2006 at 3:12 pm
Suffering from the same kind of neuoropathy as Norb, I have been fortunate enough to get sufficient Rituxan treatment about a year ago, and I have been on the mend, slowly but surely, ever since.:)
One of Norb ‘s problems getting Rituxan is that the doctors\insurance say Rituxan is only available to those with a cancercous condition. As it turns out, this seems to be a matter of definition. On this website
(Link deleted by administration)
I found the following paragraph:
[COLOR=Red]Classification of Myeloma
Patients may be classified into one of three myeloma categories (MGUS, Asymptomatic, and Symptomatic) to help to determine treatment options. Patients in some categories do not have to receive treatment immediately, but may receive bisphosphonates if osteoporosis is present, or other supportive care for symptoms and complications. In these cases, postponing therapy may help avoid unnecessary side effects and the risk of complications associated with chemotherapy and may also delay development of resistance to chemotherapy. Knowing your classification is very important in deciding when it is appropriate to begin treatment. Participation in a clinical trial is also an option for many patients.
Monoclonal Gammopathy of Undetermined Significance (MGUS)
MGUS is a common condition where a monoclonal protein is present. However, there are no symptoms, other criteria for myeloma diagnosis are absent, and no cause for the increased protein can be identified. MGUS occurs in about 1% of the general population and in about 3% of normal individuals over 70 years of age. MGUS itself is harmless but over many years approximately 16% of individuals with MGUS will progress to a malignant plasma cell disorder. Characteristics:
Serum M protein <3 g/dL
Bone marrow plasma cells <10%
Absence of anemia, renal failure, hypercalcemia, lytic bone lesions[/COLOR]
Treating MGUS with Rituxan before it turns malignant, must, I think obviously, save money for the insurance company. You tell them that from me Norb!!:mad:
AnonymousAugust 1, 2006 at 4:39 pm
[QUOTE=Allaug]Treating MGUS with Rituxan before it turns malignant, must, I think obviously, save money for the insurance company. You tell them that from me Norb!!:mad:[/QUOTE]
Allaug, my MGUS is so minor they only [B]suspect[/B] that I have it. I don’t think this argument of saving money in the long run is going to fly with Medicare, a huge government agency, mind you. Right now the objective is to treat the antiMAG IgM neuropathy which is causing my symptoms.
I am scheduled for another round of very expensive !!! IVIG Wednesday through Friday. On Tuesday I have an appointment with my neurologist. I am going to bring up the Rituxan issue again. Last time I saw her she mentioned referring me to another oncologist who might be more open to prescribing it and possibly to getting an exception from Medicare.
AnonymousAugust 1, 2006 at 6:20 pm
Sometimes I feel so spoilt living in a country like Norway, and therefore also so naïve – but – to be provocatively frank – I get so provoked by a system that seem to put money before people (almost) all the time!!! Of course it happens quite often in my little corner of the world too, mind you. Let me stop here before I say something that could provoke others……
AnonymousAugust 3, 2006 at 6:23 pm
Allaug, as I see it, the biggest hurdle is the Food and Drug Administration and its slow Federal bureaucracy. They control what drugs can be used for what disease. They first of all look at safety and effectiveness during long periods of evaluation.
I just learned today at the infusion center, that there is a two-year Rituxan trial for Multiple Sclerosis going on. There was an MS patient sitting across from me getting a Rituxan infusion. He had, of course, no idea whether he was getting the real thing or a placebo. The nurse told me she has also been administering Rituxan for patients with Rheumatoid Arthritis and Lupus. When I got back I did a search and found a number of sites reporting on the approval for RA, not Lupus.
[I][B][COLOR=”Red”][INDENT]Genentech and Biogen Idec have received US approval for the first and only selective B-cell therapy Rituxan (rituximab, marketed as MabThera in Europe) for the treatment of adult patients with active rheumatoid arthritis (RA). The approval is specifically for those RA patients who have had an inadequate response to current biologics (anti-tumor necrosis factor (TNF) therapy).
This subgroup of RA patients are considered to be the most difficult to treat. MabThera/Rituxan has been shown to be highly effective in controlling symptoms in these patients – furthermore, the long-lasting benefits are seen after only a single treatment course of two infusions.
This approval is good news for RA patients as it has been shown that 1 in 3 of them do not adequately respond to currently available biologic therapies and further treatment options are desperately needed. … (published by Roche drug company)[/INDENT][/COLOR][/I][/B]
Maybe some day the FDA will get around to looking at CIDP as a candidate for Rituxan. But then, it is such a rare disease that it probably doesn’t get as much attention and priority as MS or RA. I wonder if the drug company is exerting any influence on what Rituxan gets approved for? There is a lot more money to be made with MS or RA patients because there a so many more of them. Lobbying is such a big factor here in U.S. politics and the FDA is, after all, a federal agency. Oh well, I m just venting.
AnonymousAugust 6, 2006 at 9:23 am
Met with neurologist and we are reducing IVIG to every other week. I’m totally tense about doing this, but he is correct in saying “if we’re not going to reduce the IVIG, then why are we trying the Rituxan?”.
At this point I’m eleven days out since my last IVIG and so far so good. I’m still working full time from home and I go into the office one day each week.
Thursday, I vacuumed the entire house (small house). Friday I did some laundry and ran the hoover steam cleaner over the carpet high traffic areas in our entry way and family room. I suppose it is because I didn’t have IVIG this past Wednesday but this is the first time in eight years I have felt strong enough to do these kinds of things! Surprisingly, I haven’t really paid the price by crashing the day after. I’m sore as can be but it’s just muscle soreness from muscles complaining that they are being used again. I feel like this is a dream or something!
AnonymousAugust 12, 2006 at 8:54 pm
Well, I hate to have to post this, but I’m losing ground now that we have gone from weekly IVIG to once every two weeks in combination with the rituxan. My hands and feet are getting more numb as time goes by.
However, my upper limbs are still much stronger than they have been in years. This is very discouraging and has me pretty depressed. I’m just hoping i don’t lose much more sensation and i can continue to play guitar once again.
I’m not sure what to think or feel at this point.:(
AnonymousAugust 12, 2006 at 10:14 pm
I am also 73, on Medicare, and was in an HMO when I got Rituxan about a year ago. I learned of Rituxan’s efficacy from a former poster. My neurologist had not heard of its being used. He consulted with the oncologist and together they requested it. Personally, I think it depends a lot on the neurologist and oncologist working together to declare that one needs it.
AnonymousAugust 13, 2006 at 8:39 am
I wouldn’t get all bummed out just yet.. Just look at your post just before the last… somtimes we can overdo it and it may take a day or so for it to catch up with us. I just wanted to tell ya, that after I sent you that email, about how I was getting numb in the legs again, I woke up this morning much better. It lasted for 4 dayz. I was doing so good, I had picked up my activity some…and like you, I’ve had that panicky feeling for a few dayz. Thats the way it is for us, well me anyway.
I hope after some rest you will feel better… peace my friend.
AnonymousAugust 27, 2006 at 12:38 pm
[QUOTE=Buckeye20782] Personally, I think it depends a lot on the neurologist and oncologist working together to declare that one needs it.
Pat, yes, you are probably right. I also wonder if the one I saw thought my situation was not severe enough to bother. My neurologist said she couldn’t order it, only an oncologist. So she completely left it up to him. Now I switched to a new primary doc in Fort Collins last week. She is an internist from India with a specialty in geriatrics, real sharp, pro-active. She right away gave me the name of an oncologist here where I live instead of Denver where the others are. I am thinking about switching to this one hoping she is more open to ordering Rituxan. Maybe even find a new neurologist. The one I have is a professor at Colorado U. She was the one who finally diagnosed me correctly last fall which was quite a relief. I like her a lot but sometimes she doesn’t seem “aggressive” enough or “pro-active” (for lack of a better term).
AnonymousAugust 27, 2006 at 8:10 pm
I just returned from a week in MD where I formerly lived. While there, my neurologist was willing to see me for an update. He didn’t hesitate one bit when I asked him whether I should get the second round of Rituxan which he and the oncologist had planned for last Jan. He and my oncologist here believe that my slight improvement is probably attributable to the Rituxan and that I should get it now rather than wait to get worse. My oncologist here is planning to contact him. I’ll keep you informed. If a decision is made that I should have it, the next hurdle will be the insurance, I’m sure.
AnonymousAugust 27, 2006 at 8:28 pm
Summer is leaving us up here in Michigan, Fall is around the corner and then Winter, which I dislike intensely, though I’m a Native Michiganian, with my CIDP. Jerimy, I never did get down to Ann Arbor, to see you yet, maybe when I get better.
My Neuro Dr. Sripathi, at Henry Ford Hospital, in Detroit, wants me to start Rituxan. to be given to me by my Oncologist/Hemo Dr. Roy, up at the Morey Oncology Center, in Mt. Pleasant, MI. It’s about 15 min. North of Alma.
I have a bad infection in my left foot and taking IV Meds for it. I need for that infection to be cured before I will begin.
The Oncologist Dr. Roy’s office needs to get through the insurance maze, for payment. I go for my monthly Ivig, tomorrow, so I’m set for this month, I think. I’ve been reading the posts here on this and hope this is what I need. I hope I don’t have Osteomiolites=Bone Infection as it has been a battle for quite sometime.
I would like anyone who has had experience and more importantly success, with treatment with Rituxan, to post it here or email me if you wish. Thank You, Paul.
AnonymousAugust 30, 2006 at 2:37 pm
I note from the CIDP – Rituxan treatment thread that you say that you have IgM lamda monoclonal gammopathy. So some neurologists describe this as CIDP associated with paraproteinaemia or with monoclonal gammopathy. A recent report by a European group is quite firm in using the title Paraproteinaemic Demyelinating Neuropathy, as on my web site!;)
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