This Is MS Multiple Sclerosis Community: Knowledge & Support

I personally have talked to only two folks that were in the trial and they both
felt progression of neurological decline was arrested at least for a period of time. The main question in my mind is how long do you have to take it to maintain results.

I have been in appeal with my insurance company to consider coverage for months. 40K is a huge problem without insurance help. My neurologist from the day of diagnosis over a year ago told me it his drug of choice for me. He had 5 participants in the trial . He expects after trial results, funding and availability for this drug will be easier. I can't wait.

I'm thinking I'll see the trial results posted on this forum first. You guys(which includes girls) are the best for current research.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

I've had contact with several patients and doctors involved in Rituxan for PPMS trials.

On the patient's side, some of them have reported that the drug stopped the progression of their disease. Others reported no effect, but they may have been in the placebo control group of the trial. I have not seen any patient reports of recovery from disability. Rather, the best I've heard reported is that their disease stabilized.

The doctors I've talked to have been, I hate to say, less than enthusiastic in their responses. Dr. Peter Calabresi, at Johns Hopkins, told me that at best he'd seen stability in some of his Rituxan treated patients. I've heard the same from a neurologist who is working up in Boston. I've hounded my own neurologist, here in New York about getting me on to Rituxan, and he told me flat out that he has not seen it be effective on any of his progressive patients. This after we spent several months last year trying to get the insurance company to okay my getting the drug (they refused). He now has me on CellCept, which I believe we're going to do in conjunction with intrathecal methotrexate.

Despite my neurologists negativity, Rituxan is the only drug I've heard of that has even brought about stability in PPMS patients. At this point in my disease, stability would be a godsend. Things are going downhill rather fast, and if I could just freeze things in place where they are now I'd be more than happy.

If the upcoming trial results are positive, I will definitely demand to be put on the drug. I've very little confidence that the CellCept methotrexate combination will be very effective, and doing nothing is not an option. If I take Rituxan and see no benefit, at least I'll have gone down swinging...

Thanks for your honest post, marcstck. I certainly admire your attitude and can understand how you feel about this drug.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

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Hello everyone!

I was treated with Rituxan last August. I have had SPMS for several years and nothing (Mitoxantron, EPO, Copaxone) ever helped. I received two doses of 1000mg. No side effects. I am not enrolled in any trial, it was an off-label use. The costs for the drug was 8000€ for both doses, so I wonder why this is so expensive in the US (I am in Germany)? My insurance paid for it but it was some fight.

I have been totally stable since then, and some functions even improved. This had not happened for years. However, I must admit that I was full of hope regarding this drug so it might also be a sort of "placebo effect" (thought it is the verum, I personally ordered and collected it in the drugstore!). I already made this experience some years ago with another drug which then totally failed in the second year.

A friend of mine (unclear whether PPMS or SPMS, there might have been some relapses) was also treated with Rituxan and it did not help. I have, however, heard of some results from a leading German MS clinic in Munich that 12 SPMS patients were treated and remained stable over one year, but this has never been published in any journal. My doctor also has some success with his other SPMS patients, but I don't have more detailed information since I have not seen him since August. I'll ask him when I talk to him and let you know.

Let's hope we will have the PPMS trial results soon!

Best whishes, Tony

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Hi Bob!

It was some kind of a deal to get the treatment, but not really big. The one doc recommending it to me could then not do it as it was "against the policy of the clinic" (THE MS research center in Germany...). I was then contacting my other doctor who had already recommended it to me three years ago (!) but at that time I was still under another treatment which at that stage I did not yet want to give up. He then immediately started the treatment with me.

For the first infusion, I did not stay in hospital since they did not deem it necessary. However I was very weak after the 6 hours it takes so it would have been better not to go home. Therefore, for the second treatment after 2 weeks, I remained there one night, but I felt great and I could have gone home... Other clinics keep the patients for nearly a week!

The B-cells went down after some weeks as expected which means that the immune system is in fact severly compromised. But no vaccination or anything was required. No increase of feeling sick, fever or other colds or flue whatsoever (what I severly suffered from under Mitoxantrone). Therefore, no antibiotics were required. I really somewhat wonder why we have these B-cells!

The only thing that happened was that my dermatologist spotted some new small apparently virus-related moles. She said these are not in the least dramatic, but prefers to take them off and I will do that next week. I was a bit concerned since recently there have been some news that Tysabri may be related to melanoma but my doc said such link is not at all evidenced and that he has never seen this in Rituxan. I will have it controlled but do not really think that these are malign melanoma (keep your fingers crossed...!).

Tony

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I just finished a four week course of 956mg each with rituxan . i say just it has been about a month since my last infusion and to be honest i haven't noticed any change. i also haven't had any flare ups either. i guess with all the hipe that my neuro gave me about rituxan it was kinda disappointing. maybe i'm not giving it enough time does anyone have an idea about how long before i might see some impovement? if it was just in my bladder function that would be enough, im so sick of self cathing that it feels like my bladder is going to just quit working completly. please pm me if you have any info. thanks

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[quote="Lyon"][
A month seems kind of early to expect improvement in symptoms and there is still a lot to be learned about the effectiveness of Rituxan.

I agree. I was thinking you would have to give it at least six months to see the improvement. What concerns me the most is the exact dosage needed to bring about therapeutic response as well as the duration of treatment is still to be determined.

I keep thinking if the mid-year PPMS trial results prove its efficacy, I'm going to have to go for it with only the expectation of halting progression. Then I wait for the first myelin repair drug to bring back function.

The difference of cost between Germany and the US is interesting. Do you folks think it's a supply and demand issue or more of a government subsidy/price control issue? To me, it's got to be one or the other.

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

I was told that the immune reaction itself starts about 4-6 weeks after the treatment. So, Artifishual, 4 weeks may still be early for seeing any effect.

And I also agree - they know little about how and when Rituxan works, and in my feeling the dosage is sort of chosen randomly (not fully, but somewhat yes). The same dosage is applied with the rheumatism patients, so someone tried to treat his MS patients with this dosage and had such and such results, then everybody sticks to it and nobody would ever dare to move away from this scheme, mainly for liability reasons. I think this is quite normal, but who knows whether more or less Rituxan may be better?

The prices are in fact interesting. I assume that the average of rheumatism and B-cell triggered Non-Hodgkin-Lymphoma patients are more or less the same in the US and in Germany, so the ratio within the markets should also be more or less the same. I therefore assume that it has some regulatory background.

Tony

i have no idea how they figure the amount or duration, the nurse that started my infusion said that the dosage was determined by weight , how long you recieve it ? before i was ever accepted for this treatment my dr told me i was to have four treatments weekly and then again in eight months. this week i have had one good day when i wasn't in real bad pain. still i hate the low fric cath, this is something i will never adjust to. certain parts of my body are for fun not pain.jk.
when i go back to my dr i am thinking of asking him about hgh.
i am not disabled. i still work,luckily i have a job that doesn't require to much physical labor, plumbing designer, but anyway i want to start lifting weights again and think that if i had something to get me over the hump that i could get back in shape. let me know what you think. i am sure he will tell me know but i am going to ask him anyway. i know that if i got back in good physical condition that i would feel alot better and maybe some of this pain is muscle atropohy. just a thought

Is it reasonable to think we might see some results presented at the Annual American Academy Meeting in April in Chicago this year? Do we have any forum members monitoring or present at this meeting? I think it would be early but that would be a good place for unveiling and the timing is close!

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

The abstracts are available for the AAN meeting (Bromley posted the link). I've looked through them all and there is nothing about rituxan and MS. I don't know if they have late-breaking news presentations that aren't posted in the abstracts though...

http://www.abstracts2view.com/aan2008ch ... 2008-04-16