New to the group

Thanks to everybody giving me advice on tysabri. Very nervous because I am JC virus positive although my doctor swears I'm still safe because it's a low number but I'm very nervous. Is anybody else in the same boat as me? I have a since 1989 but I wasn't diagnosed will 2014 I'm still independent and I don't use any assistance but things are progressing which is why I'm switching therapies and hoping for the best. Good to meet you all

Lisa

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  • Hi Leahdevora . I'm not on Tysabri, but it will probably be my next DMT if I ever have to stop Gilenya. I think the acutual JCV number plays a big part in each neuro's decision. Welcome to our group.

  • I've been on Gilenya for 2 years and I don't see or feel that great on it.a lot of infections. Going to try Tysabri despite the JC virus infection.

    Lisa

  • Please keep us updated on your new medication. We'll be cheering you on!

  • Leahdevora Thank God, I haven't had any infections on Gilenya. But, I have only been on it for 1 year and have had 1 relapse. Does your neuro think that there will be less infections on Tysabri?

  • I've been on Tysabri for almost a year now. My last MRI showed no new lesions and I'm not fatigued the way I was before. In whole I'm feeling better than I have since my diagnosis. I can't say what I would do if I ever became JC positive, even a little bit. That is a scary situation to be in. I will pray for you that it is as successful for you as it has been for me.

  • Leahdevora I was on Tysabri for six years, JC positive. I never had any problem and loved the med. Then after my 72nd dose my numbers went crazy, my risk of PML went from 1in 1000 to 1 in 115. Of course I was immediately taken off it, it was the only option. But they monitor you so closely that these type of situations are caught very quickly. Tysabri was a godsend for me. Kelly

  • Thank you. That is what I'm afraid of. I'm t hinking of trying Ocravus. I have one doctor who is okay with me being jc virus positive and the other not. Not sure what to do. What are you taking now?

    thanks, Lisa

  • Leahdevora After the Tysabri I went on Copaxone, I was on it years ago. But it made me very sick, so I tried Tecfidera, even sicker. Now I am on Plegridy and doing okay. I feel like I am in a constant relapse, but don't know what to do. My disease is just progressing so fast. It is utterly frightening. Sometimes I think I just can't keep going, but I am a fighter. So I just do what I can, and give thanks for my life, all of it, even ms. You have a big decision to make. You don't have breast cancer in your family do you? Because I believe Ocrevus is counter-indicated if you do. Just an FYI. Let me know how you do. Keeping you in my prayers. Kelly 💕

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