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Ocrevus vs Tysabri - Iím getting worse and need advice!

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    Ocrevus vs Tysabri - Iím getting worse and need advice!

    Hi there, I was diagnosed in 2007. First, Avonex. Then Techfidera. And now Ocrevus. Most of my lesions are on my spine. I can still walk without aid up to 1/1.5 mile. Whatís getting bad for me is the small day-to-day stuff. Iím fatigued and muscle fatigued after making my bed and similar activities. Prolonged standing is also extremely difficult.

    My dr is now considering switching me to Tysabri. He said a lot of people feel better after. I donít know exactly what ďbetterĒ means, though. Iím sure itís different for everyone. I just want my legs to feel normal.

    My question is, has any one made this switch? Or, what are your thoughts of Tysabri?

    Thanks so much!!!

    #2
    Hi BalletBunny,

    I have never been on Ocrevus, but just started my 9th year on Tysabri. Previously had been on Avonex, then Rebif. I truly wish I had started on Tysabri.

    Like you, I am predominantly spinal lesions, C2-C6. If I remember right, 16 on c-spine, compared to 4 in the brain.

    I pretty much stabilized on Tysabri with no new lesions. I feel better on Ty than previous medicines and a few symptoms improved some. Even though it is designed to prevent relapses, some people experience improvement in symptoms on Ty. I am guessing that is what your neuro referred to. A woman I know was using a walker, but no longer needs it.

    Others, have experienced no change in existing symptoms. For me, it helped with fatigue, dizziness, and balance. I haven't had to increase the dosage I take for spasticity and also bladder issues. Unfortunately, my arm pain and numbness worsened some, but it is also one of my oldest symptoms and I am sure the damage was already done.

    I am happy on Ty and now on 3rd neuro, all of whom were happy with my stability.

    I wish you lots of luck with your decision.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Hi, I am at this moment, receiving my first full infusion of Ocrevus after having the two half doses back in January. About a month and a half after my second infusion I noticed that I was walking a bit better. I could walk farther. This last month has been very rough, so Iím hoping to have a similar response this time around.
      Paula

      Comment


        #4
        Originally posted by BalletBunny View Post
        Hi there, I was diagnosed in 2007. First, Avonex. Then Techfidera. And now Ocrevus. Most of my lesions are on my spine. I can still walk without aid up to 1/1.5 mile. Whatís getting bad for me is the small day-to-day stuff. Iím fatigued and muscle fatigued after making my bed and similar activities. Prolonged standing is also extremely difficult.

        My dr is now considering switching me to Tysabri. He said a lot of people feel better after. I donít know exactly what ďbetterĒ means, though. Iím sure itís different for everyone. I just want my legs to feel normal.

        My question is, has any one made this switch? Or, what are your thoughts of Tysabri?

        Thanks so much!!!
        Hello,

        There are numerous characteristics of each med that could play a part in your consideration, here are a couple...

        PML can be a concern with Tysabri but only if you are JC virus positive. There is a blood test for that and you will be or already have been tested for JCV antibodies. There is a great deal of info at this site about JCV but your treating physician should be your go to source when possible, of course.

        Presently, there is a concern among up-to-date neuros at least, with Ocrevus regarding coronavirus pandemic due to at least one published case study (there may be others) of a lady on Ocrevus stricken by Covid-19 who recovered but did not develop antibodies to it. Some researchers have hypothesized that, perhaps, Ocrevus blocks the development of Covid antibodies. It is too early to know for certain from limited study if that is true, or not, but it is a concern.

        Ocrevus is an anti CD20 medicine. CD20 is a certain type of B-cell in the immune system. Ocrevus kills most of that particular type of B-cell, along with some other kinds of B-cells. Each person re-populates those B-cells at an individual pace, however, Ocrevus is most often given at 6 month intervals, as you know.

        A few progressive neuros have begun infusing based on blood work which measures how quickly B-cells and a few other things such as IgA, IgG, and IgM get renewed. The thought is why keep killing something if it is already dead? You may also be aware that Covid-19 can dramatically diminishes those immunoglobulins, especially in severe cases.

        So being on a med (Ocrevus) which already diminishes those values and normally takes many months before your body gets rid of Ocrevus versus Tysabri which clears the body in a few weeks may be a factor, also.

        The reason MS is treated with Ocrevus in the first place is to diminish certain immune cells and if those are diminished what value is there to another infusion killing something already dead? Would not a more intelligent way to infuse be based on looking at blood work measuring those values rather than looking at six months on a calendar? To say nothing of being more financially responsible.

        At least that is the approach my spouse and her neuro are presently taking. So far, her infusions are a bit more than a year apart.

        But back to the point... if Ocrevus does indeed block or hinder antibody development to Covid-19 that would mean a Covid vaccine would be virtually useless to someone on Ocrevus. Warning here! Please do not take this as fact when it is only at the beginning of being studied. For now, it is something to be made aware of because it could play a part in future considerations. Also, there may be a window of time between infusions where a Covid-19 vaccine would work if the immune system has recovered sufficiently. JMHO here but I would bet my last tomato that time frame would be beyond 6 months with Ocrevus. JMHO.

        Lastly, and most importantly... you asked for thoughts so here goes...

        I am a huge fan of Tysabri because my spouse had outstanding success with it for roughly 15 years. Her first dose was March 2002 in Phase 3 trials. She switched to Ocrevus a bit too early, IMO, but it is what it is. Her JCV titers were extremely high making Tysabri more of a risk than Ocrevus which has very, very risk of PML, thus the switch. But her health was better on Tysabri.

        Your neuro is considering a switch, perhaps, because Ocrevus is not working as well as hoped. Perhaps, Tysabri will put the brakes on your MS, perhaps, it won't. But one thing seems apparent, Ocrevus may not be working too well.

        JMHO, but if stem cell transplant in the USA is not a possibility (and if that procedure is a possibility please note it is as dangerous as a minefield having it done overseas) Tysabri may offer the best chance at your ballet future. There are no guarantees with MS, as you well know, but I would have to agree with your neuro about Tysabri possibly working well for you. Just my thoughts.

        Best Wishes!

        Comment


          #5
          My oak,
          How much time should there be between the last dose of Ocrevus and the first dose of a covid vaccination?

          Comment


            #6
            Originally posted by KittyCoCo View Post
            My oak,
            How much time should there be between the last dose of Ocrevus and the first dose of a covid vaccination?
            My neuro told me if the covid vaccine is a live weakened vaccine the answer is it would never be allowed while on Rituxan/Ocrevus. If it is a "dead" vaccine it could be tried - probably about a month before you are due to your next dose - but it would likely not be very effective since immunity depends on B-cells primarily. The new RNA vaccines that nobody knows much about - probably never on Rituxan/Ocrevus. Your only option really is to stop treatment - allow you B-cells to return to normal - get the vaccine and then wait at least 60 days to return to Ocrevus :-(

            Comment


              #7
              Hi Balletbunny,
              I happen to be a Tysabri cheerleader. I started it 10/2006. My ms wanted to exacerbate and an ms specialist offered Ty to me. I will always be grateful to her even tho other than that she was not too much of a specialist. Ty halted my ms, my MRIs got better (no new or active lesions and some old got smaller or disappeared) my balance, stamina, fatigue got better. I did exercise (to the best of my ability) mostly in water as my main sx was/is my R leg does not move much.

              This friggin covid 19 has harmed me. No pool for 4 months and this nasty heat has hurt my mobility. I am hoping Ty is going to help me regain where I was ?? We'll see.

              If I could've started Ty 6 months earlier I would've had my R leg and been dancing like no one was watching or everyone was I'm now 71 years of age.

              This is me and my story..I wish you my best
              Linda
              Linda

              Comment


                #8
                Hi BalletBunny ~

                Thought you might be interested in this recent article about Tysabri.

                "Treatment with Tysabri (natalizumab) can lessen disability in people with relapsing-remitting multiple sclerosis (RRMS), a large and real-world study found, supporting ďconfirmed disability improvementĒ reported in a pivotal clinical trial."

                https://multiplesclerosisnewstoday.c...op-study-data/

                Good luck with your decision!

                Take Care
                PPMS for 22 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Hi Balletbunny - I have recently been given the option of going on Tysabri or Ocrevus. My MS has progressed to progressive MS. I hope you can tell me what you chose and how your are doing? This is a hard decision. Thank you

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