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Test for JC virus came back positive; now what?!

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    Test for JC virus came back positive; now what?!

    Hello,

    My blood test for the JC virus just came back as positive at 2.74H. I just saw the results online so I haven't spoken to my neuro yet. I took the test last week in order to be able to start Tysabri, so I guess that's not happening now! I think he said that Ocrevus would be the alternative? Anyone deal with this before? If it's not one thing, it's another!

    Thanks :-)

    #2
    There is a graphic out there in cyberlandia that shows the PML risk with the JCV+ status. Try looking at Bart´s blog in London- google Barts London MS to find it. My gut says that you won´t be put on Tysabri, but hey, Ocrevus is only 2x a year once you´re past the first split dose and it is comparably effective with a slightly different safety profile- no PML as of yet but a possible elevated breast cancer risk.

    Comment


      #3
      Your risk of getting PML is higher if you:
      • have received TYSABRI for a long time, especially for longer than 2 years
      • have received certain medicines that can weaken your immune system before you start receiving TYSABRI
      • have been infected by the John Cunningham Virus (JCV). Before or while you receive TYSABRI, your doctor may do a blood test to check if you have been infected by JCV. JCV is a common virus that can cause PML in people who have weakened immune systems, such as people taking TYSABRI.


      Having done your Ty investigation, the above might not be news to you but the other two factors may be significant in your case. Maybe your neuro will weigh those against your antibody level. Please let us know what happens.
      All the best, ~G

      Comment


        #4
        Originally posted by Jillmich View Post
        Hello,

        My blood test for the JC virus just came back as positive at 2.74H. I just saw the results online so I haven't spoken to my neuro yet. I took the test last week in order to be able to start Tysabri, so I guess that's not happening now! I think he said that Ocrevus would be the alternative? Anyone deal with this before? If it's not one thing, it's another!

        Thanks :-)
        You know, you do have a high titer. That being said, you could safely take Tysabri for 24 months if your neurologist would prescribe it. At that point you could move to an extended infusion schedule that lowers the risk of PML by up to 94%. However, Ocrevus might be a better alternative. Infusions have the highest efficacy for MS, along with the highest potential for healing. There is another infusion on the way to approval, probably within the next year. I've attached a couple items that might help with your decision.

        Ocrevus https://www.youtube.com/watch?v=J4prsO-FDzs

        Extended infusions https://www.mdedge.com/neurologyrevi...mab-associated

        Comment


          #5
          I too am JCV+ and several neurologists stated they wouldn't even consider Tysabri for me. I also would select Ocrelizumab over Tysabri based on everything that I know. Yes, many loyal Tysabri users will defend their beloved medication, but you cannot prescribe Tysabri to yourself. Talk to your neurologist and get their guidance.

          There's absolutely nothing wrong with Ocrelizumab. It's generally 2 infusions for your initial dose and then an additional infusion every 6 months. It's generally well-tolerated and has a modest side effect profile. Ocrelizumab also has very respectable performance numbers (although it's still relatively new to the marketplace).

          Please let us know what your neurologist says.

          I wish you well...

          Comment

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