Rituxan...Anybody??

Hello. I just joined the community, but am not new to MS. I was diagnosed in 2007. I started out with RRMS, but was recently told by my doctor that I have progressed to SPMS. I was on Tecfidera, but it's not working. I am going to start Rituxan this week. I have limited mobility, balance issues, weakness.

Does anyone use this medication and have you seen any improvements?

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16 Replies

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  • Hi lmstunned welcome to a group no one wants to be part of. But we all fight together. We pretty much talk about anything here. I'm on copaxone and don't know anything about Rituxan, but wanted to say hi and welcome :)

  • Thanks

  • Welcome to the group. I personally don't have any knowledge of the medication. I was just diagnosed in May of this year and am still waiting to be put on medication. But there are a lot of people in this group that have tried multiple medications so hopefully you will get a response to your question. Again, welcome to the group.

  • Thanks. There are a lot of medications out there, so good luck.

  • I was in the Rivitalise trial at NIH (https://clinicaltrials.gov/ct2/show/NCT01212094?term=%28Multiple+Sclerosis%29&spons=NINDS&locn=NIH&rank=1). I was in treated group & I got rituximab both IV & IT. Still progressed, maybe slower - difficult to tell.

    Taking cladribine now: multiple-sclerosis-research...

  • Welcome, @Imstunned. Thank goodness that Tecfidera works for me. I tried Gilenya and Copaxone but they didn't do the trick. I'll just add my welcome as well, because I know nothing about Rituxan.

  • I have heard of retuxan but for kidney issues not MS. Let us know how you make out

  • Imstunned it's Fancy1959. During the almost 2 years I was on Tecfidera, I too, had my MS advance from Relapsing-Remitting MS to Secondary Progressive MS. I wish we would have watched my progression closer. I would have liked to have been taken off Tecfidera before I progressed to Secondary Progressive MS. I am sorry I don't have any experience with Rituxan. I had to go back on Tysabri, the IV drug you take every 28 days. I have a major secondary health issue that limited what therapies I could go on. When I went into the neurologist office to advise him I wasn't doing as well he ordered testing for me. When my test results showed the progression I had complained about, my neurologist had the audacity to inform me it was normal progression found in patients in their 15th to 20th year fighting MS. So basically I should get use to it. Do you ever wonder where some doctors loose their beside manners? I plan on fighting this progression tooth and nail! All the while praying the new therapy being released for use early next year does truly help Secondary Progressive MS by reconnecting the nerve links damaged by repairing Myelin MS had destroyed. I plan to fight on, like an MS Warrior!

  • Thanks for your reply. I plan on fighting also. I have made some changes in my diet. Keep on fighting!!

  • Hello I'm stunned,

    I have PPMS, diagnosed on 11/2015 at 55 years. My dr has had me start Rituxan. I have had 2 infusions 2 weeks apart in July. My next infusions would be in January. My understanding is it is a sister drug to Ocrelizumab coming late this year.

    I wasn't sure about it. But I tried it. They told me that significant improvement happens with the second round. Improvements would happen then. Honestly, it has helped some, but not as much as I would like. But it is better than steroid infusions, I'm thinking.

    I'm finding that this is a journey where we hope something works. I've also seen that everybody's MS is different. Some things work for others and then not.

    I'm glad that I did do this route. I'm hoping for improvement.

    David

  • Thanks for your reply David.

  • Hello!! Yes, I actually had my 1st round of Rituxan in April. I'm due for my 2nd round next month (Oct.).

    Ok, so immediately following the infusions, I slept for about 16-20 hrs a day X 2wks. I felt worse and wondered if I'd violated my body for no good reason. However, after a few weeks, I began to feel what my doctor believes is/are my nerves repairing. It's a feeling that, of course, I can't really describe.

    I have RRMS, my doc told me that he wanted me on Rituximab so that I wouldn't get worse, and so that I could possibly get back what I'd began losing. You see, my walking was becoming difficult, and my right foot was dropping.

    Fast forward... I actually can't wait until I get my next round. No more foot drop, and I've been able to get around much better. My walker is in the closet...

    With MS, we must only do what we can live with. Treatments work differently for everyone; do your research.

    I hope this helps.

    Blessings

  • I would only say that initial extreme fatigue affected me. Other than that, I'd say no. Make sure you drink water like a fish... Our kidneys need the help!

  • That's great. I pray for continued improvements for you. I took my first infusion on Wednesday. Have not had any side effects.

  • I replied to my own...my bad. Look up!

    😊

    Blessings

  • I get Rituxan tratmements. It helps to keep me mobile. I can't work anymore, I can't stand. I can walk just a short time, with a cane.