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    Tysabri?

    I always see all the positive posts for Tysabri but I really think I am not seeing the negative posts because the people that had problems got off of Tysabri and then they no longer post about Tysabri.
    If you had a negative experience with Tysabri would you all please just post it here so I could get a better sampling.
    I have read posts from people trying it and then I never see or hear from them again so the only ones in the Tysabri forum end up being the ones taking it and liking it.
    I am sure this is probable true of the other drugs also but it just seems more so with Tysabri.
    Thanks Tortis

    PEACE

    #2
    Mine wasn't what you'd really call a bad experience, just different. I was on Tysabri for a year. Every time I had an infusion, the first hour went fine. Then when they monitored me for the second hour, the first 30 minutes I would sit and shiver. I'd drink hot cocoa, where sweats (even in August!) but then I would be fine and feel great the rest of the month until it was time for the next infusion.

    I'd go through the same ordeal each month. Finally in month eleven, I quit the shivering! Thought my body had finally gotten used to the medicine! I went in for an MRI, and had more lesions! That doesn't usually happen on Tysabri, so they did the NABs test. I had developed antibodies to it, had to quit taking it because it was just like shooting water into me!

    I felt great on Tysabri, and was sad to have to change meds. But obviously it wasn't for me, since I developed antibodies to it. I've been on Copaxone since, and will stay on it for as long as I can. I got more lesions with Avonex, itched the entire year on Rebif, developed antibodies to Tysabri, so I'm leary of changing meds. My MRIs seem to be about the same, but my walking and balance seem to steadily get worse.

    I thought Ty was easy, and I don't remember having as much fatigue. But it isn't for everybody!
    Brenda
    Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

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      #3
      One year for me

      I was on Tysabri for a year exactly when I turned JCV+. That becomes a total game changer. It eliminates many of the DMT's available for any future use and you can no longer qualify for an organ transplant because the anti-rejection medication can also cause PML.

      I did not have enough positive effects from Tysabri too take the risk of staying on this medication.

      It was a difficult choice to start it but easy to end it, infusions always went well, although the fatigue became worse and the lesion on my C1 enlarged but did not show active.

      Good luck in your choice.

      Peace,
      Anna

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        #4
        I was on it for 3 years / 39 infusions with no issues then Neuro thought Aubagio would be better for me. After 2 years on that he recently switched me to Lemtrada.

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          #5
          Originally posted by hobbit View Post
          I was on Tysabri for a year exactly when I turned JCV+. That becomes a total game changer. It eliminates many of the DMT's available for any future use and you can no longer qualify for an organ transplant because the anti-rejection medication can also cause PML.

          I did not have enough positive effects from Tysabri too take the risk of staying on this medication.

          It was a difficult choice to start it but easy to end it, infusions always went well, although the fatigue became worse and the lesion on my C1 enlarged but did not show active.

          Good luck in your choice.

          Peace,
          Anna
          This is seriously the first time I'm hearing this... As far as I know that's only the case when you have had chemodrugs but Tysabri is not a chemodrug. It's an immunomodulating drug not immunosuppressing. Will ask my doctor this though...

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