Treatment with Rituximab?

[anon07072023]

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

[bobbles_now]

I was diagnosed with MS in 2008 on the week of April fool's Day and Neuromylelitus Optica in 2011.  Go figure.  Anyway to make a long story short, I was placed on Betaseron first then Gilenya.  In addition to these treatment plans, I take Baclofen, Gabapentin, Oxycabazapin and Cymbalta.  (Prior to my MS diagnosis, all I took was a multivitamin).  I started Rituxan treatments at the end of 2011.  I don't feel any particular difference.  My MRI's seem to show no new lesions, which is great.  I now have to get my Rituxan infusion once every 6 months.  I hope this is in some way helpful to you.
My neurologist and his staff are the best ever.  If they can put up with and answer my over abundance of questions, then they deserve an award!  I can be a b&*tch because I am trying to "get rid of and fix" this MS crap.  It hinders me from working out like I want (balance issues) and I have put on the weight I lost prior to my diagnosis.

I refuse to give up so you shouldn't either!!!

bobbles_now

[TheDarkKnight786]

Hello!

I am a 33 years old man diagnosed with MS and my doctor will treat me with Rituxan. Are you still treated with Rituxan? Is it working for you?

Feedback is much appreciated.

BR
The Dark Knight

[esoterik1967]

I know this is an old thread but I wanted to put my 2 cents in. I started Rituxan 2 weeks ago. I have tried first line drugs after I was diagnosed (Copaxone, Rebif) with no positive results. Then last year I tried a new Neurologist who I really like and she wanted to try Tysabri so I did that for 8 months. That was a disaster. My MRI showed only minimal lesion reduction. After I stopped last January I waited to try anything else because Tysabri wrecked me. I have a very stubborn case of MS I was told.

And then in June I developed Rheumatoid Arthritis. So with my MS and now RA, my Neuro wanted to try Rituxan. Our hope is the drug and its mechanism of action will favor my physiology and my reaction to drugs. For example I suffer from bad fatigue and have been Prescribed everything from Ritilan, Adderall, Provigil, Nuvigil et. al. and none seem to work that great and on a consistent basis. I am even on the legal limit of 60mg of Adderall and I can still fall asleep sometimes.

Since my Neuro and I think I have advanced out of the Relapse Remitting stage to maybe secondary progressive she is very helpful and wanting to slow down the progression of my MS and RA and we are both hopeful that Rituxan will be "it".

Being only 2 weeks I haven't noticed any difference with the RA but I have noticed that I am not as fatigued and this will sound strange but my prostate has shrunk in size and I have no problem urinating now. A good side effect I guess. The only bad thing is my allergies have really flared up more than normal.

I go in for my 2nd infusion in about 6 hours from now. I am going to ask them about adding Methotrexate as an adjunct to the Rituxan to kick the RA.

[sllowe]

Hi Julie,

While you happened upon an old post, I'm glad you asked this question because it's a good reminder that I need to follow up on these studies.

I do not believe we have any members on it currently. But,  Karmastruck perhaps you can hit that member up via a note, or personal mail because she says it worked!

Here is an older link to the study (among others) where it didn't show so much promise for PPMSers, it did however show decreased disease activity in RRMSers.....

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

Hope this helps, and you hear back from her.  Please let us know how you are feeling and if you care to share a bit of info about how you come to the point to take this med, we'd love to hear. You can start a new post so we can welcome you properly!
-Shell

[Julie831]

Hi there, I just started Rituxan yesterday and would love to know more about what your experience has been. All so scary at first. I hate not knowing...

[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.

[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.

[anon07072023]

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

[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

[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

[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

[anon07072023]

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  

[COBOB]

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

[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

[anon07072023]

bump

[anon07072023]

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

[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