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    Rituxan (Rituximab)

    Open for discussions about the use of Rituximab for MS patient.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Rituximab has been approved by the U.S. Food and Drug Administration for treating diseases such as Non-Hodgkin's lymphoma and rheumatoid arthritis. Doctors sometimes prescribe Rituxan for treating MS, although the FDA hasn't approved it for this use. This is referred to as “off-label” drug use.

    Has anyone here has been on this and would like to share their stories, concerns, pros and cons? It might help others along the way to determine if this drug would be helpful for them.

    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator


      Rituxan experience

      I had been on Gilenya since 2008 (I started in the trial) for 11 years and was doing well until last year. An MRI in August 2019 showed new lesions and I was having symptoms as well. Because I had just left my job, I was also going through an insurance/medical provider change at that time.

      My new neurologist recommended Rituximab for me because I am JCV + (Tysabari contraindicated) and family Hx of breast CA (Ocrevus contraindicated).

      I had my first two infusions, divided doses, in November 2019. I had no issues at all. The process was easy. Go to an outpatient infusion center and had to stay about 5 hours. I was a little sleepy with the IV benadryl, but afterwards, the small dose of Solu-Medrol gave me a slight energy boost for a few days. I will be getting labs in about a week and my next infusion, full dose, is scheduled for end of May.

      My only concern with this medication is the current COVID-19 pandemic and having and assumed very low resistance to viruses/infection. So, because I also have diabetes, I have been at home for three weeks to limit my risk of catching COVID. I may decide to forgo this next infusion in May after discussing with my neurologist and the PharmD who manages my labs/infusions.

      Overall, I can't say there was a huge change in my MS but, I think it may take another dose to see improvement. I have not yet had a follow up MRI. The infusion nurses all told me that many MS patients feel much better when they return for the 6 month infusion. The best part is not having to take a daily medication or an injection for MS!! After 13 years of taking an MS med, it is very nice to not have to think about that!

      I am interested to know how others feel about being so immunocompromised due to their MS treatment during this pandemic.


        Hi Jeanette,

        I am wondering what you decided to do about your next Rituximab infusion? I am in the same boat and having a hard time trying to decide what to do. After talking to my neurologist, I think I am going to go ahead and re-dose on time in early June. My disease has been very active and he feels the risk of relapse is higher than the potential risk posed by Covid. I have been in my house for months now except for a few doctor's appointments. We are going to delay my MRI's, unless there is new activity, until late summer or early fall.



          My Fight for Rituximab

          I've been on rituximab for 5 years now and it's been a Godsend.

          My DMT journey reads like a Stephen King novel. Copaxone gave me huge welts up to 6 inches across by up to one inch tall. Shared Solutions and my neurologist were saying welts were common and just keep on adjusting depths, use prepH, ice, heat, etc. When I had my follow-up appointment my neurologist looked at my welts and immediately took me off the medication.

          Next was betaseron and that gave me terrible flu like symptoms and hampered my mobility. A few months later my neurologist took me off of it and we tried rebif. While rebif and betaseron are both interferons we hoped there was enough difference to make a difference. Rebif really was different. Where betaseron was horrible, Rebif about put me in the hospital.

          The neurologist then considered Tysabri, but being JCV+ decided against it. So we tried IVIg for several months. It was interesting to say the least. I felt like garbage for maybe 7-10 days post-infusion, then felt great for 10 days, then the benefit started to wear off. We tried 5 different IVIg brands, before calling it quits.

          I then went without a DMT for many months because there were basically no available options left. I remember writing my neurologist my Christmas wish list, "All I want for Christmas is my BG-12." BG-12 was approved like 10 months later and branded Tecfidera. I immediately went on Tecfidera and became a proponent for the medication. Unfortunately, I never stopped flushing. Not after 6 weeks, not consuming fatty meals, not going back to the 120mg dose, not even after 2+ years. I developed shingles 3 times on Tecfidera and was the first person to report it to the FDA. The flushing is ultimately what did me in. I was flushing 12-16 hours per day and in the Texas summers it was just too much.

          I next wanted my neurologist to put me on rituximab, but he wanted aubagio or Gilenya. I told him the efficacy of aubagio was no better than the CRAB drugs and I wanted something more robust. We got into a philosophical debate about the quantity of life versus the quality of life. I told him I would rather die earlier with more of my faculties than living longer with additional deficits. "I think you might feel differently if you were sitting where I am" as I pounded on the armrests of my wheelchair.

          Without control of a prescription pad I begrudgingly agreed to go on Gilenya. Gilenya promptly spiked my blood pressure by 60 points so that was a waste of time. Like rebif, I was on Gilenya less than a week.

          My neurologist and I went back to debating aubagio vs rituximab. Neurologist said," if you can get a MS Specialist with over a 50% MS patient load I will reconsider." I made an appointment and MS Specialist agreed on rituximab. He said, "not good enough." I made an appointment with another MS Specialist who also agreed with rituximab and he said, "still not good enough." I made an appointment with another MS Specialist who said, "aubagio is a fine medication."

          What I didn't know is my neurologist and the 3rd MS Specialist went to medical school together and they had already discussed my case. My neurologist had trapped me. This upset me greatly and I started getting into it with MS Specialist #3. It's worth noting that MS Specialist #3 is world renown and does major MS drug testing.

          I took a deep breath and composed myself and asked him a question. "Dr. Xxxx, what is the ideal goal of DMT therapy?" He hesitated for a second and I answered my own question. "Isn't no evidence of disease activity (NEDA) the ultimate therapeutic goal for MS drugs?" He said, "yes." I followed up, "If NEDA is the goal are aubagio and rituximab equally able to help me reach NEDA." He responded, "definitely not, rituximab is much more efficacious." My response was, "that's why I want rituximab." That changed his mind and after 3 MS Specialists and over 9 months my neurologist finally put me on rituximab.

          Interestingly enough, after my fight my neurologist started putting other MS patients on rituximab (Ocrelizumab still wasn't approved at this point).


            wow, Marco! What a story of your path to Rituximab. It is a perfect example of what me must do to be our own advocates. I hope you do well on it for many years to come
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator


              Rituximab is used off-label for MS as clinical trials were never completed. The patent for Rituximab was expiring soon so the drug manufacturer decided not to spend time the resources to get MS as an indicated condition. Instead they used R&D efforts to get Ocrelizumab (Ocrevus) trialed and approved.

              Rituximab is chimeric in nature, Ocrelizumab is humanized, and Ofatumumab that should be approved in several weeks is all human. They all deplete b-cells by binding to CD20, but all three do it slightly differently. It's worth noting that while Ocrelizumab and rituximab are infusions, Ofatumumab will be a self-administered injection.

              Back to rituximab.

              Since rituximab is used off-label there is no absolute dosing standard for the drug. From pre-medications, to dosing quantity, frequency and everything else may vary from neurologist to neurologist.

              Generally speaking, most patients receive two infusions of 1000 ml, two weeks apart as a loading dose. Afterwards, dosing is most often every 6 months. Pre-meds also vary, but often include Benadryl (IV or pills), Tylenol and a small dose of Solumedrol (IV).

              Most neurologist just dose every 6 months unless something prompts them otherwise.

              There's a blood test to determine if your b-cells have started repopulating that some neurologists use to determine the optimal dosing frequency. I know patients that get rituximab quarterly and others annually. There was one observational study that suggested rituximab benefits could last for 2 years.

              The old practice was 1000 ml, but I see more and more patients being given only 500 ml as their maintenance dose. I lobbied for 500 and my neurologist agreed after trying it, followed by the aforementioned blood test verified no b-cells were circulating after 6 months.

              Pre-meds and Side effects
              Many rituximab patients complain about infusion side effects, but their symptoms are often to the pre-meds and not to Rituximab.

              Benadryl in oral form rarely causes side effects, but side effects are more common when given via IV. Drowsiness, headache, nausea, upset stomach are some of the more common side effects.

              IV Solumedrol even in small doses is notorious for side effects to include: irritability, insomnia, swelling, increased blood sugar levels, etc, etc.

              I'm not a proponent of steroids so I asked my neurologist if I could forego them all together. Of course he was skeptical, but he agreed to half the dose every infusion provided I was not having side effects. I've now gone 3 years without any steroids.

              As for infusion side effects, the more common ones are headache, flushing, nausea, chills, and coughing. If you experience any, or other, side effects let the infusion nurses know. They will typically give you a bit more Benadryl and slow the infusion rate down.

              I have never had any rituximab side effects, but side effects often include: headache, fever, chills, stomach pain, nausea, diarrhea, heartburn, flushing, night sweats, weakness, muscle or joint pain, back pain, or dizziness. Yes, there's a lot of overlap between pre-meds and the medication itself.

              A word of caution when reading online about rituximab. Rituximab is often used in conjunction with chemotherapy treatment for lymphoma and rheumatoid arthritis. In these scenarios, side effects are often "worse" because of the quantity of rituximab given and the other medications given in combination with it. It's also more common for people to complain online than give neutral or positive feedback.

              Rituximab Results for Me
              Prior to Rituximab, I had noticeable MS progression even though my MRIs were generally stable. Since I started Rituximab, there has been no known progression, no MRI activity and no relapses. In other words, I have reached a state of NEDA, no evidence of disease progression. Short of a cure that's as good as it gets. I just wish I had started rituximab years before I did.


                I've been on rituximab for about 5 years now. It is the first and only DMT I've had. I am almost 70 years old, have been diagnosed with MS for over 20 years and am secondary progressive at this point. I managed my MS during the relapsing remitting stage with strenuous exercise, various statins, a few supplements, a decent diet and occasionally a couple of months of Methotrexate after an exacerbation. My most prominent symptom is/was fatigue, hence the strenuous exercise, the exacerbation's did not tend to be severe.

                In my early 60ies I began to notice a more progressive decline. My neurologist at the time probably wasn't familiar with MS drug therapies and wouldn't discuss nor recommend one for me. In fact, when I suggested it, she wouldn't prescribe Methotrexate either in spite of my opinion that it had been effective in the past and my never having taken very much of it for very long. I immediately began searching for a new neurologist within the HMO that I belonged to.

                The first words out of my new neurologists mouth at our first appointment were something to the effect of "No I won't prescribe Methotrexate so don't even ask". Apparently I had acquired somewhat of a bad reputation for asking for a drug that I thought had helped me previously. But at least the new neurologist was willing to discuss Copaxone as a DMT, although as far as she was concerned, I was still relapsing remitting but would probably age out of the MS so was therefore on the verge of being too old to benefit from a DMT. Fortunately, while I was searching for another neurologist, she quit.

                Her replacement was a young guy who had just finished a fellowship at one of the preeminent MS clinics in the U.S. At our first appointment he also mentioned the Methotrexate. I explained that I felt it had help me in the past but I had never taken very much of it or used it for very long. He explained that there was no scientific evidence that it helped MS and we basically left it there. By the end of our appointment he had diagnosed me as secondary progressive and recommended I think about getting on a DMT, specifically rituximab. He mentioned several MS clinics that had reported good results on a large number of people including many who were secondary. He was also concerned about my age but told me to think about it. I got my first infusion 4 months later after the blood work, a steroid injection in a bad hip and a whole bunch of vaccinations.

                Sometime after about my third infusion I came down with a serious bowel infection which required emergency surgery and a very long and painful recovery. My neurologist looked into the possibility that the rituximab may have been involved in acquiring the infection and determined that there was precedent. We discussed three options, discontinuation (his preference), continue as before or continue based on B-cell activity in blood tests. I chose the last option. Now I get a blood test 6 months after each infusion. If there is evidence of B-cell activity I get another infusion, if there is no B-cell presence I wait a couple more months and may or may not get another blood test before my next infusion. Initially the MS progression (B-cells) began to return about 8 months after the last infusion but more recently I seem to be able to go longer between infusions, I am almost up to a year. I imagine there may be a cumulative effect to the rituximab.

                My neurologist quit a year or two later to take a job as head of neurology at a VA hospital. I knew he would as he was way too smart for that HMO and I am very happy both for him and for our veterans who he will be treating. The protocol has been fixed and my new neuro, who I picked because he is an avid cyclist as am I, has no problem following it.

                Concerning Covid, after discussion with my current neuro, I decided to delay my next infusion because I do notice a period of about two weeks after an infusion where I am not quite my usual self. I think the only reason I notice this is because of some of the strenuous exercise I do that I'm not quite up to for about two weeks but regardless, I am concerned that there may be a drop in my immune system in addition to the B-cells as a result of the infusion. I am almost at a year now and thinking it's time so my plan is to see how things are going down at covid central and get another blood test for B-cell activity and see if I can line up the next infusion.

                One more thing. I had the "Ageing out of DMT" talk with my current neuro. He asked me what I thought. My response was "Over my dead body".


                  Rituximab 1000 vs 500 ml

                  A new study has found that reducing rituximab dosage from 1,000 mg/6 months to 500 mg/6 months is a safe and stable choice for patients with multiple sclerosis (MS).

                  "Given its favorable cost-effectiveness profile, [rituximab] remains a valuable treatment option in the current landscape of MS treatments, even at the reduced dose," wrote Giulio Disanto, MD, PhD, of the Neurocenter of Southern Switzerland in Lugano, and coauthors. The study was published in Multiple Sclerosis Journal.



                    Marco, I am curious. When you wanted Retuximab and your neuro said no, then said get ms specialists to give you the ok and he would give you the med. Then when 2 did give you the ok, your neuro set you up with the 3rd that he now wanted. WHY in the world did you keep this neurologist ??

                    I had neuros that wanted to take me off Tysabri to CYA and I found new neuros in a heart beat and I didn't live in a big city! You had 2 ms specialists that would give you Retuxin.. once again I ask why keep your neuro ?

                    I did start this post by saying "I am curious"



                      Originally posted by lindaincolorado View Post
                      Marco, I am curious. When you wanted Retuximab and your neuro said no, then said get ms specialists to give you the ok and he would give you the med. Then when 2 did give you the ok, your neuro set you up with the 3rd that he now wanted. WHY in the world did you keep this neurologist ??
                      Unfortunately, substandard care is too often the norm at the VA. My neurologist is the Chief of Neurology at our clinic. My neurologist is a very kind man and wants "to do no harm." That's what his hang-up on Rituximab.

                      The alternative would have been going 3 hours each way to see a neurologist in Dallas. This would have also transferred ALL of my medical care to Dallas (primary care, optical, etc.). Nope, too far to travel.

                      The upside is the VA pays for 100% of MS care so not a penny out of pocket ever.

                      I see my neurologist this Friday and I am going to ask him about annual Rituximab dosing and Ofatumumab. Should be interesting.


                        My neurologist agreed to extended dosing for Rituximab. We're going to try annual dosing and see what happens.

                        He had never heard of Ofatumumab so that discussion never happened. If the VA has approved it by next March we'll discuss it at that time.

                        The VA, at least in Central Texas, is actively trying to move all Ocrelizumab patients to Rituximab to save money.


                          I started on Rituxan Dec 2017 for secondary progressive MS. I've had a total of five doses. I'd been warned that -- because of my age and the fact that I wasn't having relapses -- I shouldn't expect to see any profound improvement. And I haven't. My walking is still worsening, but at a much slower rate than before. Recently, I've felt that my cognition and urinary frequency have improved but I think the former may be because I'm weaning myself off clonazepam and the latter because of Ampyra (the Ampyra's been a great help in many ways -- unfortunately I can only take it once a day because I can't sleep with the second dose).

                          I haven't noticed any side effect from the Rituxan. I did have an infusion reaction (itchy lips) with my first dose so now my infusions are given more slowly and I get more premeds and solumedrol. Other than feeling a little more tired for a day or two, I feel fine afterwards.

                          My last Rituxan dose was in February. I decided to delay the dose that was due in August mostly because I don't want to go to my HMO to get the pre-infusion lab work and I figure that I will continue to be somewhat immunosuppressed for a while.

                          Both the generic rituximab and the infusion procedure are free through my Medicare HMO plan with Kaiser. It saves them -- as well as me -- a lot of money over the alternatives.

                          Here's my MS/MS tx history if you want to read it:
                          I've had MS for almost 40 years. My major problems are with fatigue and walking. I had a very mild course for the first 20 years and had my first disabling relapse about 21 years ago. At that time, my neurologist recommended that I start Avonex. I spent the next several years on Avonex/Betaseron, hating the meds pretty much every minute of it and having worse and more frequent relapses than I'd ever had before. Then I went into the clinical trial for fingolimod and fell in love. No relapses, no MRI activity. I felt well for the first time in years! I did have one outbreak each of shingles and herpes simplex (I'd found out during the trial that I carried the herpes virus, but had never been aware of an outbreak). I would still be on fingolimod if my walking hadn't noticeably deteriorated.

                          The neurologist I had for the fingolimod study suggested Ocrevus when I went to her to talk about the worsening ambulation. When I told my Medicare HMO (Kaiser) neuro about it, he enthusiastically suggested I try Rituxan instead.