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    Tysabri Rebound Effect?

    My son has been on Tysabri for 100 months and it has been amazing for him, no new leisons, relapeses, etc.

    His JVC count jumped in his last blood work results and his neuro is taking him off because the risk of PML is just too high now.

    I am very concerned about what will happen now - his MS was so bad before Tysabri that I'm afraid of what's going to happen. His last infusion was 3 weeks ago.

    Has anyone quit Tysabri? What was your experience?

    Thanks,

    Dedra
    Dedra
    Son with MS

    #2
    Hi Dedra,

    I don't have an answer to your question I'm sure someone will be by soon who can.

    Glad to hear your son has been doing well I hope you will be able to keep us up to date on how he is doing, take care!
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      I went from Tysabri after 39 months to Aubagio with no rebound effect.

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        #4
        Hey Snoopy - been a long time!!

        And thanks, that is good to know - I believe that is the medicine Dr. Hutton recommended, but I think he is hesitant because he and wife want to have a baby.
        Dedra
        Son with MS

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          #5
          Originally posted by pb909 View Post
          I went from Tysabri after 39 months to Aubagio with no rebound effect.
          Thanks PB that is good to know!!
          Dedra
          Son with MS

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            #6
            I know on facebook there is a group for people coming off of Tysabri (don't know the name of it sorry)...that might be of some help...best wishes!
            dx 2002 rebif 2002-2013 Tecfidera 2013

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              #7
              Originally posted by D_HOLLAND View Post
              My son has been on Tysabri for 100 months and it has been amazing for him, no new leisons, relapeses, etc.

              His JVC count jumped in his last blood work results and his neuro is taking him off because the risk of PML is just too high now.

              I am very concerned about what will happen now - his MS was so bad before Tysabri that I'm afraid of what's going to happen. His last infusion was 3 weeks ago.

              Has anyone quit Tysabri? What was your experience?
              I had a very bad rebound after quitting Tysabri, which happened approximately 3 to 4 months after my last dose. I lost my full-time job as a result, and have never fully recovered! I think they are now including warnings in the literature about not stopping cold turkey so I would definitely recommend that your son speak to his doctor about his options before stopping.

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                #8
                Tysabri Rebound Effect?

                I wish good luck to your son and to you.

                I was on Tysabri for 10 months about three years ago but knew that treatment would only be temporary as I am JC positive and have young children. Although those 10 months were the best of my MS life, the after-effects were quite bad for at least nine months, which I had not anticipated. I actually believe I was worse coming off of Tysabri than I was when I went on. That said, I came off cold turkey -- I don't know if that's still the recommendation.

                Perhaps your son could go on IV steroids (rather than the Acthar that was recommended for me) to dampen down the rebound.

                I hope it all works out well for you all.

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                  #9
                  Hello D_Holland, I was on ty for over 6 yrs. and had to stop because of jcv+. I did not have a rebound effect. I have now been on tec. for over 2 yrs.

                  I hope your son does well.
                  God Bless Us All

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                    #10
                    Thank you all - he went today for a round of steroids, his doctor wanted to be as careful as possible and starts Tecfidera this week. Praying everything goes well!!
                    Dedra
                    Son with MS

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                      #11
                      Hi Dedra,
                      how is your son ? I hope doing well
                      Linda

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