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A year on tysabri with no problems. Just got word from my neuro that my blood tested positive for JC virus. I'm freaked out! How worried should I be? Anyone else been in this boat? Comments / info encouraged! Thank you.
Was this your first test or were you tested negative before and now positive? Even if tested positive, there are certain parameters indicating the degree of risk to develop PML. They range from 0.7 to 1.5 If you are tested positive and you are close or above 1.5 then you run a high risk.
Whatever the case is, even if you have to stop tysabri this usually occurs after the second year.
Then you switch to another treatment.
Hi Blhornz

In May this year I will have been on tysabri for 3 years, and so far have tested negative for JC virus (I have a blood test every 6 months and am due for one in March). I have been on OMS program for 2 years and put a lot of hope that it will help keep me well when I need to stop tysabri. I am not sure what I would do if I tested positive but I know I get very anxious waiting for the blood test result every six months! I know my neuro has said he would want me to stop tysabri and switch to another drug. I was not aware of the ranges of risk mentioned by PAPAGEO which I might ask more about. Good luck in working out what is best to do. Not an easy decision. Sorry I could not help more.
Because of my concerns about continuing with Tysabri my neuro is starting me on Tecfidera. I'm excited to start something new.
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