• Debb posted a new activity comment 1 month ago

    Thanks for the information Ed. My dr thought I was on tysabri for less than 2 years and didn’t test me for jcv like he was supposed to. I was on it for 3.5 years and I’m jcv positive. He said I have a 1/100 chance of getting pml and if I do it will be aggressive. I appreciate your notes of information. Makes me feel like I’m not alone in this.
      • Debb,

        I’m not a medical professional but I think your doc is off base saying your chances are 1 in 100 of getting PML. I’m JCV positive and was on Tysabri a total of 7 years..from Feb. 2008 to April 2015. About halfway through I reduced my infusions from every 4 to every 8 weeks because my JCV titer score was rising. Finally, I was taken…

        [Read more]

    • Debb posted a new activity comment 1 month, 1 week ago

      Thanks Ed. I was wondering if there is any information on dangets of PML other than the one article you posted. I could find a way to open a question on this forum.
      Thanks.
      Debb
        • Hi Deb,

          This web page has a comprehensive look at PML. https://www.ninds.nih.gov/disorders/all-disorders/progressive-multifocal-leukoencephalopathy-information-page

          Many people carry the John Cunningham virus. People who are JCV positive are more susceptible to the brain disease PML, which is a really lousy disease. People who are being…

          [Read more]

          • Debb replied 1 month ago
            Thanks for the information Ed. My dr thought I was on tysabri for less than 2 years and didn’t test me for jcv like he was supposed to. I was on it for 3.5 years and I’m jcv positive. He said I have a 1/100 chance of getting pml and if I do it will be aggressive. I appreciate your notes of information. Makes me feel like I’m not alone in this.
              • Debb,

                I’m not a medical professional but I think your doc is off base saying your chances are 1 in 100 of getting PML. I’m JCV positive and was on Tysabri a total of 7 years..from Feb. 2008 to April 2015. About halfway through I reduced my infusions from every 4 to every 8 weeks because my JCV titer score was rising. Finally, I was taken…

                [Read more]

        • Debb became a registered member 1 month, 1 week ago

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