Treatment with Rituximab?

Hi Everyone,

My neuro had written in his notes that he may consider treating me with Rituximab in the future.
From what I've read, it sounds really risky. He said that way he could treat me with one drug for both MS and neuromyelitis optica (NMO), since he was still unsure which one I had.  

Anyone ever take it or know someone else who has?
Any thoughts?

Thanks,
Kelly

[missy72450]

Hello,

Rituximab is a monoclonal antibody they use for things such as Rhumetoid arthritus, Neuropathies and othe autoimmune disorders. I have not given it myself for MS but since he is thinking of a dual diagnosis maybe that is why.

People typically tolerate it fairly well. They go slow with the first treatment to make sure there are no reactions, and increase the rate the second time.

It never is fast like with Tysabri. But as with any drug there are risk and side effects.

Good luck.

Missy

[kelly97]

Thanks Missy for the information.  

No one else must know about this drug, because nobody responded besides you.
It must be kind of rare in the MS community.

-Kelly

[kelly97]

bump

[COBOB]

There are a couple of studies about Monoclonal Antibodies being used to treat MS.  DR.s can use them today, but "off-label."  I don't know if any results have been published yet.

Bob

[COBOB]

Monoclonal Antibodies in Multiple Sclerosis Treatment: Current and Future Steps
http://www.medhelp.org/posts/Multiple-Sclerosis/Treatment-with-Rituximab/show/1377489

[kelly97]

Oh, great, thanks Bob. I copied the title of the article into my browser, and I'll see what the article says.  I'm meeting with my neuro next Friday, and I want to be aware of it before I go in to see him.

Thanks,
Kelly  

[Karmastruck]

Hi Kelly! I am 31 years old and was diagnosed with MS when I was 27. I've tried copaxone, betaseron and even low dose naltrexone...NOTHING worked! I was being hospitalized (5-12 days at a time) due to my severe flare-ups. I changed hospitals (a university hospital) and my new neurologist suggested Rituxan. I got my first dose back in April 2009 and I have been flare-up free ever since!! No hospitalizations, my walking and balance are much better, no more optic neuritis and my MRI show no more disease progression. Rituxan has been my blessing. I get the treatment (one dose, then another 2 weeks later) once every six months. Here's the catch: Rituxan is not FDA approved for MS so your insurance will NOT pay for it. Genentech, the pharmaceutical company that makes Rituxan, will donate the drug for free and all you'll have to do is pay the infusion center fees. In my opinion, well worth it! I was so lost and depressed when I was getting sick all the time, but now I have such peace and happiness. I hope Rituxan works for you. Feel free to email me if you have any questions at ***@****
Good luck!
~Alisia

[sllowe]

Kell,
Kell,

I've no experience, but it has been discussed here and there. Sending you these for starters:

http://www.medhelp.org/posts/Multiple-Sclerosis/Treatments-in-the-pipeline-for-progressive-MS/show/760170

Info here from 2008:
http://www.medhelp.org/posts/Multiple-Sclerosis/DMD-Research-Update/show/698417

2008 study, but think this will be helpful while search for updates to it and others:
       http://www.nejm.org/doi/full/10.1056/NEJMoa0706383

[Odiesmama2008]

I go to the University of Colorado Medical Center and I'm just beginning Rituxan therapy -- so I can't tell you what it has or hasn't done.  I can tell you that I'm one of several patients taking it and that they just opened up a double blind study for Rituxan with Copaxone as a combination therapy.  Watch the research blogs for how that does -- the study will take approx 18 months to complete

[kelly97]

This is actually an old post - a year and a half old. But thanks for your responses. My new neuro hasn't ever mentioned starting me on this.

Thanks,
Kelly

[Noriey]

Hi Kelly, I been on rituximab since June 2011, it has worked well for me, I was on my second exacerbation w RRMS, my left leg was very weak as well as foot motion, with Physical therapy my mobility has improved, had cells tested and need another infusion, I have had no side effects, its been 9months, I move around much better with walking aids. Thanks for listening.

[sunnycloudy]

I was very happy to read about how well Rituxan worked for you and hope it is still the same.
It has been over a month since the 2nd of the first set of Rituxan infusions and I am waiting for improvements. The only thing to report is that fatigue has really reduced.