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JCV positive and Tysabri

Hello lovely people,

I got a call from the hospital on Friday letting me know that my last screening test for JC virus came back positive. My next appointment is in June, meaning I have two more Tysabri infusions before I can change dmd. I find this very confusing - my next infusion is on Friday coming. While, I trust the MS' nurses decision I am wondering if anyone else has experienced this. Tysabri has been amazing so far. I have had MS since 2007 and am 40. I was put on Tysabri Dec 22 after a relapse that destroyed my frontal lobe, making me a well spoken 2 year old. X Thank you XX Lori

  1. I'm sorry to hear about the relapse that you had in December and the symptoms that it triggered. It's good to hear that you're working closely with your doctor and medical team. They're best trained to give you advice based on your specific health needs. That said, I understand your concern despite their green light on the upcoming treatments. I did a little research for you and found these articles about the JC Virus and am passing them along in hopes that they'll be helpful. I'm sure others will chime in with their firsthand experience, but I wanted to get these in your hands in the meantime.
    https://multiplesclerosis.net/living-with-ms/pml-jc-virus-misconceptions
    https://multiplesclerosis.net/living-with-ms/101-understanding-pml-jc-virus
    Keep us posted on how you're doing!
    Best
    Alene, moderator

    1. Thank yo Alene, that is so very kind of you. I appreciate your message greatly

      1. we're here for you! It's not an easy road that we travel, but it certainly helps to walk it other people who "get it."
        Best
        Alene, moderator

    2. I can empathize with your trepidation, ! I would feel the same way about staying on a treatment that is causing negative issues within my body. But, as Alene said, your own medical team will have the best idea of how to advise you. They probably have valid reasons for wanting you to continue with your treatment protocol until June. But, definitely talk to your doctor about your concerns and questions.


      I am sorry for this new diagnosis and I do hope you find a new treatment that works great for you and doesn't cause serious side effects!


      Best, Erin, MultipleSclerosis.net Team Member.

      1. Thank you so very much;I appreciate it!

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