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Odds of getting PML with a JCV index value of 3.28

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    Odds of getting PML with a JCV index value of 3.28

    I’ve been on Gilenya for six months. Before I was onRebif for 12 years but had to stop.


    When I went to see my Nuero recently, he told me that recentblood work revealed that I had the JC virus. He didn’t have the results of the index value on file. Two-three days later I get a call from myNuero’s office telling me that my index value is 3.28.



    Since being positive for JCV is linked to a greaterchance of coming down with PML (if you’re taking an immunosuppressant drug likeGilenya) I’d like to know if anyone can help me figure out the odds of medeveloping PML with a 3.28 index value.


    I have a call in for my Nuero but he’s not the quickcalling type. He’s also kind of vague with his answers. In our last visit he mainly stressed theclose monitoring that would be done because of the JCV result. However, he did say that my JCV index valuewould determine the odds of me getting PML.

    Thanks

    Lucia



    "It's easier to be critical than correct."- Disraeli

    #2
    I don't know if I can give you an answer, but I can provide some information. <.20 is negative. .20-.40 is considered indeterminate. >.40 is considered positive; however, many neurologists feel that up to .90 is O.K. Being JC+ gives you a 1/80 chance of contracting PML. I don't that your titer number places you at greater risk, but it is up there.

    However, I know a number of Tysabri users who continue to use this drug on an
    "extended schedule". I don't know if this is an option with Gilenya. Treatment of PML has advanced in the recent years, but it is still a real risk. Hope this helps.

    Comment


      #3
      Hi Lucia:

      There are multiple complicating factors in the development of PML, and the results of the JCV antibody test alone cannot be used to determine anyone's risk of developing PML.

      The well-researched odds of developing PML apply only to a combination of all of the following factors:
      • Results of the Stratify JCV Antibody ELISA test
      • Tysabri use
      • Length of Tysabri use
      • Prior use of immunosuppressant drugs


      With other drugs, the drugs are too new, there are too few cases of PML, and there are too many other factors involved to make reliable calculations from.

      The "greater chance of developing PML" is acknowledged based on general knowledge that PML can develop in immunocompromised people and never in people with normally functioning immune systems. But it's a general statement. If all your neurologist said was that your JCV index would determine "the odds of you getting PML," he gave you an explanation that's so oversimplified that it's impossible.

      No risk can be calculated from the antibody index alone, so your question can't be answered in any significant or useful way -- by anyone.

      Comment


        #4
        Thanks ru4cats and Reagan for your response.

        My Nuero did get back to me (or rather the nurse who passed my question on to him) did.

        The upshot is they really don't know. Like you said Reagan, the other drugs (like Gilenya) are too new for a firm answer.

        In the end, only time will tell. Because I'm JCV+, I'm under close monitoring now (MRIs every 3 months, blood work, etc.) for any early probable sign of PML developing.

        Lucia
        "It's easier to be critical than correct."- Disraeli

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