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  • Rebound

    Looking for some general feedback in the MS population that follows this site. I'm coming off of Tysabri after 38 infusions. I haven't had any new lesions while on it or for several years prior, but my disability has progressed. Hence the progressive MS diagnosis. Unfortuneately, my Doctor doesn't follow the Bart's MS site, and I will just come off Tysabri and wait for something for progressive MS to be available.

    I'm so fearful of rebound. Have any of you been on Tysabri and come off without being placed on a DMT? Did you have severe rebound, greater disease activity?

  • #2
    Lmh - I don't have any advice for you but wanted to let you know that you are far from alone with this fear.

    The rebound is my worse fear. I have infusion #10 later today and will only stay on Ty for 2 years since I am JC+. I will be going on another DMT afterwards but I assume there will be a wash out period.

    That is what I am fearful of. I am hoping to hear anyone else that has experience with this as well!


    • #3
      Lmh, you and your neuro might find this article interesting. Apparently there were some papers presented at last year's ectrims meeting dealing with switching from tysabri to rituxin and avoiding the "rebound". The general public may not have access to those studies but your neuro or local MS center should.


      • #4
        Another consideration on Tysabri is that extending time between infusions decreases PML risk but still maintains Tysabri's effectiveness against MS.

        It would appear that going beyond two years is safe if time between doses is extended. The decreased Tysabri concentration allows better immune surveillance against the JC virus which causes PML.


        • #5

          Thanks everyone for your input!! I've been reading extensively on the Bart's MS site about Tysabri rebound, and it causes me a sleepless night every time. They have a solid protocol they follow, but my Neuro is still believing a long washout is needed! Since I am progressing disability wise, but no new lesions, he has decided I won't benefit from Tysabri ( or any other available DMT) and need to wait for Ocrelizemab to be approved. I have my own fears with that, and would rather take rituxan. Unfortunately, my issuance won't pay for it.

          If I wasn't already on it for 38 infusions I would consider the longer time between infusions. At this point I'm worried about sero conversion and PML. The rate of conversion is higher than previously thought, and I feel like I'm pushing my luck. Yikes, this is hard.
          Your comments are so valuable! Thanks🙂