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I cam back pos. with high titer

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    #1

    I cam back pos. with high titer

    I have been JCV- for the last 30 months I thought, but they hadn't checked my JCV since April of 2014. Just checked last week and it came back positive with a titer of 3.5. I am having an exacerbation so they were worried it might be PML and did an emergency MRI before I could get steroids today.

    My chances of getting PML are now 8 out of 1,000. Anybody in the same boat, and did you stay on Ty? I am leaning towards staying on it just because it works so well. I don't know anymore. I can't take interferons because they give me bone marrow failure, I can't take copaxone because it did me no good. I am really not into going backward in efficacy. They did talk with me about Lemtrada, but said I may not qualify due to my high kidney function.

    I HATE THIS FREAKING DISEASE!!!

    Thanks
    Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri
    Tags: None
    #2
    What about Rituxan? They are giving it for compassionate use. You have to go through an approval process...but I don't think that would be a problem.

    Not recommending it...just something to talk to your Neuro about.

    Hope the IVSM is working.
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

    Comment

      #3
      Originally posted by KatieAgain View Post
      What about Rituxan? They are giving it for compassionate use. You have to go through an approval process...but I don't think that would be a problem.

      Not recommending it...just something to talk to your Neuro about.

      Hope the IVSM is working.
      Thank you I will ask about that next week

      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment

        #4
        My neurologist has recommended Lemtrada, or another chemo drug called Mitoxatrone.

        NO FUN

        Lisa
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment

          #5
          Originally posted by 22cyclist View Post
          I HATE THIS FREAKING DISEASE!!!

          Thanks
          Lisa

          Me too.....

          Comment

            #6
            Originally posted by Windwalker View Post
            Me too.....
            22 cyclist,
            I was just wondering what you decided about treatment.

            I have been on Tysabri for almost 7 years now with high titer numbers. I find it hard to get the information I need to keep making informed consent decisions.

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