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Tysabri

bhow4323
bhow4323 Posts: 5
in Social Groups
My neurologist would like for me to start using Tysabri in place of Rebif that I currently am on. I would like to hear from any that are on it, to see how it works for them. Any help would be appreciated.

Replies

  • DsAdvocate
    DsAdvocate Posts: 93 Member
    I was on it for 3 years and during that time I didn't have any relapses or new lesions form. Once off of it I had testing done for the JVC virus and I have it so I can't go back on Tysabri. i'm on Gilenya now and in just a few months I've had 2 new lesions.

    What they don't tell you is that when you go off of Tysabri you're likely to have a huge attack. No one told me and when it happened my doctor just shrugged it off saying that this normally happens. He's done a lot of research on Tysabri so he's seen many more patients on it than your typical neurologist. After having that attack I don't know if Tysabri was worth it.
  • bhow4323
    bhow4323 Posts: 5
    Thanks so much for your experience. I am not sure I want to change to it, since I am doing fairly well on the Rebif. My daughter is getting married in Oct, so I think I will not make any changes before then.
  • rob_v
    rob_v Posts: 270 Member
    Im on it now - and love it.
    Dont have time to write more right now - but Ill hit this thread later - look up some of my old posts if you dont want to wait.
  • lessofme65
    lessofme65 Posts: 107 Member
    I was on Tysabri for 4 years, had 3 or 4 exacerbations during the treatment but they weren't as extreme as the ones I had when on Avonex. The numbers were chance of PML in you 1st year 1 in 2,000 and in 2nd year 1 in 1,000. Chances had nearely doubled and there weren't any odds for 3 yrs or higher. Since I'd had more exacerbations than expected I was questioning if it was worth the risk when a patient from my neurologist's office was diagnosed with PML and died shortly after. Needless to say that made up my mind and I switched to Copaxone. I've been on it over a year and a half with not 1 exacerbation. You really need to do what you're comfortable with just make sure to do the research. The convenience of the monthy infulison was so convenient, much better than this daily shot of Copaxone. But for me it's worth it since I wasn't comfortable with the odds.
  • Yellerie
    Yellerie Posts: 221 Member
    I have been on Tysabri for 3 years after going through other options. It has been fantastic Coxpaxone, Rebif, Aveonex & with those drugs I was having issues & new lesions continued forming since I have started the Tysarbi I have been stable & no new lesions although I admit I was terrified to go on it (when I started they didn't have the antibody test yet) but definately the best decision I have made.

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