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Just found out I'm JCV+

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    Just found out I'm JCV+

    Hi everyone,

    I just found out I am JCV+ I have been on gilenya for 5ish years and have never been on Tysabri but was hoping I would be able to go on it in the future since I have heard great things about it and I might want something stronger than Gilenya. My question is...did the gilenya cause me to be JCV+ or can anyone just randomly be JCV+? Is it anything I need to worry about?

    #2
    Anywhere from 60-80% of the population are JC+. It is acquired from fecal matter exposure (probably in childhood), and only makes an appearance when an individual's immune system is suppressed. The diagnosis of HIV is when the importance of JC status was recognized. Drugs don't "cause" the JC virus; rather use of an immunosuppressant drug allows the virus to work.

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      #3
      Originally posted by ru4cats View Post
      Anywhere from 60-80% of the population are JC+. It is acquired from fecal matter exposure (probably in childhood), and only makes an appearance when an individual's immune system is suppressed. The diagnosis of HIV is when the importance of JC status was recognized. Drugs don't "cause" the JC virus; rather use of an immunosuppressant drug allows the virus to work.
      Thanks for your response. I never like to hear I'm "positive" for something. I have enough health problems, I don't need anymore! I guess I just need to educate myself more.

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        #4
        Many individuals that are JC+ still remain on their drug of choice. What's important is the index value. <.2 is considered negative, .20 to .40 is considered indeterminate, and >.40 is considered positive. However, many neurologists feel people who test positive are "safe" up to .90. This is where I would start, and go from there.

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          #5
          Originally posted by ru4cats View Post
          Many individuals that are JC+ still remain on their drug of choice. What's important is the index value. <.2 is considered negative, .20 to .40 is considered indeterminate, and >.40 is considered positive. However, many neurologists feel people who test positive are "safe" up to .90. This is where I would start, and go from there.
          Hello and thanks for your response. I do not know my index value. Is this something I should ask my neurologist to test for in your opinion?

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            #6
            Originally posted by ru4cats View Post
            Many individuals that are JC+ still remain on their drug of choice. What's important is the index value. <.2 is considered negative, .20 to .40 is considered indeterminate, and >.40 is considered positive. However, many neurologists feel people who test positive are "safe" up to .90. This is where I would start, and go from there.
            It's important to note that this index applies ONLY to Tysabri and the STRATIFY test. There is not yet a known relationship of this index to any other medication. JCV index from the STRATIFY test absolutely cannot be used to determine PML risk for Gilenya for people with MS any more than it can be used to determine PML risk for azathioprine for people with lupus or for rituximab for people with rheumatoid arthritis, or for anything else. Knowing an index value for one medication might seem like a nice theoretical starting point. But without any kind of comparative scale for any other medication, there's no way to know what a "safe" level is, and the value of the index stops at theory.

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              #7
              You are correct jreagan. Since I'm on Ty, I need to remember that what I know about the JC virus is limited to just Ty. Point taken and a needed reminder.

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