Rituximab Therapy

[AMFADVENTURES]

Rituximab, brand name Rituxin by Genentech and Biogen, is an immuno suppresant that has been shown to be effective in both the relapsing and progressive forms of MS. It has only passed through phase I and II trials of the FDA approval process before trials were halted and thus has never been approved by the FDA for use in people with MS. The patent on Rituxin either has or will be expiring soon, hopefully it will continue to be available or be picked up by a generic manufacturer. Genentec is currently running a phase III trial for FDA approval of Ocrelizumab for MS which targets the same immune system CD 20, B cells as Rituxin and which is proving to be highly effective for both relapsing and progressive forms of MS, although not necessarily any more effective than Rituxin nor with any better safety profile.

Oddly, NMSS does not have any information on rituximab, possibly because it isn't FDA approved for use in people with MS. But then, even more oddly, NMSS does have quite a bit of information on the use of marijuana in people with MS in spite of it's never having been approved by the FDA and in spite of it's still being illegal at the federal level. But enough editorializing. Fortunately MSAA does have some information worth reading on rituximab.
http://www.mymsaa.org/publications/m...-2015/rituxan/

For a LOT more information see the following or google rituximab for ms:
http://www.msdiscovery.org/research-.../229-rituximab

Before my neuro would approve rituxin therapy, he required a head and thoracic MRI with and without contrast. He also required the following blood tests: Immunoglobulins G.A.M., IGE total, Hepatitis B surface antigen, Hepatitis B surface antibody, Hepatitis B core antibody, Liver function panel, CBC Blood count and a basic metabolic panel. All in all, I gave up eight vials of blood, enough to make me dizzy.

I passed all of my blood tests and my MRI did not show any active lesions. However, based on my complaints regarding recent disease activity, I have been upgraded to secondary progressive and approved for rituxin therapy.

Rituxin, as used for people with MS, has shown a very good safety profile. It has been effectively used by the Rocky Mountain MS Clinic in Colorado with very few side effects. The most common side effects apparently are injection site irritation and a greater susceptibility to chest infections. According to one of the RMMSC’s doctors, it has also been used on 900 patients in Sweden (or was it Switzerland) with no significant side effects. I believe there was a presentation about this at the recent ECTRIMS conference.

Many insurance companies will not cover the use of rituxin in people with MS, however some will approve use upon appeal or when threatened with a more expensive option. Medicare and SSDI do cover rituxin therapy in people with MS.

My neuro did warn me that I do not have the best profile for benefiting from rituximab therapy. I am too old and I have had MS for too long but he has willingly prescribed it for me.

I am currently going through a maze of vaccination twists and turns. I will post again when it all culminates.

Larry

[Cvfactor]

Good luck. Even though it's not approved this would be my choice if I had to escalate to a more potent therapy.

Here is an article about it:

https://neuroimmunology.wordpress.co...ple-sclerosis/

[Marinadca]

Good luck Larry!

Currently I am on Tysabri, but am JC+ (very positive) so will only stay on for 2 years. I am looking at a similar drug next, ocrelizumab.

[AMFADVENTURES]

Thanks CV and Marina. I appreciate that info CV, while trying to research rituxin, my impression has been that things have gotten worse as far as even finding information on it. I wanted to include this link from these forums in my above post but couldn't find it at that time so here it is, quite a bit of info here. http://activemsers.wssnoc.net/showthread.php?t=1869

Marina, you should find this recent link having to do with rituximab at ECTRIMS last year quite interesting too.
http://www.medpagetoday.com/MeetingC.../ECTRIMS/54060

I've hit some delays with the vaccinations recommended prior to the rituxin therapy but should be back on track by next week and will update then. I probably won't actually start the therapy until early March. I'm excited to try this therapy although not overly optimistic it will help in my case. But from what I've read, it seems the potential downside is minimal.

[Marinadca]

That is very interesting to me! I especially like the safety and tolerability of these drugs. I have another year plus a few months with Ty and will be watching this super closely. As my next drug will likely be an Anti-CD20.

I hope this does very well for you Larry, please let us know

[teena marie]

Hi Larry,

Very interesting. I'm curious about what you felt was changing with your MS.

I'm wishing you only great things with this treatment and looking forward to what you experience.

Take good care,

Teena Marie

[AMFADVENTURES]

Hey TM, the changes with my MS were pretty obvious, after nearly a decade of not much progression, the last 2 1/2 years have been like a continuous mini relapse. Weakness and tingly numbness traveled up the right side into my shoulder, arm, hand and fingers. Slight spasticity in the hand followed, then it hit the left foot and I started getting really worried. Wasn't having any luck with Neuros at the time either, all they'd do is have me get another MRI which always said the same thing, no active lesions. Finally found one willing to help and that's where I am today. If the Rituxin slows the progression I'll be satisfied, if it stops it I'll be ecstatic, the likelihood of reversal, although documented, is too remote to even contemplate.

I have a boat load of vaccinations scheduled for next week, I'll update again after that. The actual infusions should start in early March.

Thanks TM,

[Suebee]

Larry, good luck with the new regimine. I appreciate you sharing all the info you've gathered and your personal experience. Keep us updated. Sending good wishes your way.

[MSLazarus]

Too old to start!??? AMFADVENTURES.

Hi,
I have been on Rituximab for four or five years. I am 67 which is why I noticed the comment about being too old or having MS too long to benefit.

Rituxan has been great for me. I have done all the DMDs, I did IVIg for 8 years, then Novantrone and now rituxan. (Maybe I forgot something)

I also take Ampyra and many other symptom management drugs.

The rituxan keeps me walking and farming! The general protocol is to have infusions every 6 months. Two infusions separated by a week.

I can tell when it is time for the next infusion because the rituxan wears off and I have trouble moving. It does not seems to fix anything but does a good job of covering up many symptoms.

Good luck to everyone who tries it.

[AMFADVENTURES]

Vaccinations for PWMS, Use Caution!!!!

A word of warning for MSers who, like me, may not be aware that not all vaccinations are necessarily safe for PWMS. In general, a person with MS should check with a knowledgeable MS specialist before getting ANY vaccinations, in particular vaccinations using live attenuated virus. This includes some flu vaccines, shingles and yellow fever. NMSS does provide guidelines concerning vaccinations at: http://www.nationalmssociety.org/Liv...s/Vaccinations although their opinion is based on MSers using one of the immune therapies. I specifically don’t agree with their opinion on the safety of the shingles vaccine and at least some neurologists in my area agree with me.
IMO, the safety of vaccinations in people with MS has NOT been thoroughly studied.

Having said that and on advice from my neurological dept., I recently received the flu, pneumonia, hepatitis A, hepatitis B booster, and typhoid vaccinations as a preventative measure prior to rituxin therapy. All of these vaccines use an inactivated virus. So far, the only side effect I’ve noticed has been a pair of incredibly sore shoulders. Fortunately the CDC has recently determined that a single yellow fever vaccination provides immunity for life, mine was reasonably current. Most of these vaccinations are not required for people living in the US, however I may have occasion to visit Africa sometime in the not too distant future for which they are recommended.

I tried to get these vaccinations 3 weeks ago however on that day I had had a steroid injection in a bothersome hip joint and was told by the immunization nurse that I needed to wait at least two weeks because steroids can interfere with the effectiveness of the vaccines. Now I need to wait at least 2 more weeks after the vaccinations before I can start the rituxin therapy and another two weeks for a little beach and ocean vacation time. Hopefully I can start the actual rituxin infusion the second week of March.

Thanks for the well wishes Suebee, I am excited to start this therapy, I wish I could speed it up. And Linda, I truly appreciate your speaking up about your rituxin experience, perhaps others will also. I’ve talked to several MSers who are undertaking this therapy and so far no one has reported a bad experience.

Take care all,
Larry

[Veronica]

Such good information here, Larry.... If I am JC positive, I am certainly going to speak with my neurologist about switching to Rituximab.... When I asked him about it in April, I had no reason to switch....and was just curious of his opinion of it. I am intrigued by the reports, including MSLazarus' here of improvement of symptoms, in addition to the disease modifying aspect.

[MSLazarus]

I am always glad to talk about Rituximab...

Send along any questions that come up.

I have responded well to the drugs I have tried. So, with management, I have no grievous symptoms.

I did IVIg for 8 years. That was 70g every other Monday. It was an 8 hour infusion day with the premeds and setup. I would lumber into the infusion and walk out strongly. It was that fast for me. The cost was enormous...the amount I was taking put the cost at around $80,000.00 a month. (I was lucky to have had a malignant melanoma which was successfully removed but made me ineligible for More standard drugs at that time.)

after 8 years it stopped being effective and I stopped to move on to Novantrone for two years.

None of the meds I do make functioning easy But they do make it possible and life is fuller because of them.

[AMFADVENTURES]

Chemo Lite

Rituxin update,
The only reaction I had to all of the vaccinations I took was about 2 weeks of muscle and joint stiffness, there were not even any pseudo symptom exacerbation's that I could determine. In fact, within three weeks after the vaccinations I felt better than I've felt in the last couple of years.

I had the first rituxin infusion two days ago, 1,000 mg in solution, it lasted 5 and 1/2 hours. I did experience relatively minor flushing and itching around the head and neck about 2 hours into the infusion but it went away within the next hour and a half. I was a little ditzy the rest of the day, more so than normal as several of my friends can testify, probably the result of the Benadryl given prior to the infusion. The next day I was slightly short of breath and noticed a higher than normal resting heart rate but that all seems to have cleared up after another day. I've also had a little trouble sleeping since the infusion, possibly from the Solu-Medrol given with the rituxin. Other than that, this has been pretty easy.

Apparently this is the only infusion I will receive at this time. I will see my Neuro in a few months and I guess we will evaluate effectiveness and determine future dosages then. If anything develops I will be sure to let you all know.

Thanks for the input Linda, good to know you haven't experienced problems 5 years in. Hope you will stay current on this thread if anything does come up.

Larry

[MSLazarus]

Still on Rituximab and doing ok. new variation on rituxan has been fast tracked..

Sorry if I wrote this before bit I did not reread the thread. The new version is called something like ocrezumab??

Anyway, this new version has shown real benefit for some progressive MSers. Frankly, I read so much I forget a lot of it. Spring has begun here and there is too much greenhouse work to do! But, and this is the point, I am managing to function well. My husband is out planting the pea field right now!

I am the best pea-picking wife around...!

[AMFADVENTURES]

Thought I'd pop in here for a quick update, being that I've been feeling pretty solid of mind lately, a state I fully realize is a matter of opinion. Be that as it may, I have been feeling pretty good since the rituxin infusion, actually since a week to 10 days before the infusion when I first began to feel the constant gnawing of the ms at my nervous system, which I'd been experiencing for the last few years, begin to lift. So, although it's likely the rituxin did not initiate this current remission, at least it hasn't impaired it.

There was a period of reduced red blood cell count right after the infusion but with the aid of iron complex supplements, I think I've overcome that. There haven't been any other adverse side effects from the infusion that I'm aware of and there certainly hasn't been any detectable ms progression. In fact, although I wouldn't say I've recovered any function, I would say that I am functioning with less effort, if that makes any sense to anyone. As a side bennefit, I've also been experiencing quite a bit less arthritic pain in various joints. I'm committed to at least a couple of years of this therapy by which time I hope to have a firm opinion of how well its working for me. In the absence of any change, I'll update again at my neuro app in a couple of months.

So far so good,