Anyone carry the JC virus and take Gilenya?

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.
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ThePirate
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Anyone carry the JC virus and take Gilenya?

Post by ThePirate » Mon Mar 21, 2016 2:06 am

Hi all! I've been taking Aubaggio for the last few years, but my neurologist wants me to switch meds as I've had two relapses in the last two years. He is suggesting Gilenya - but I've just been reading about the PML cases, and I've been tested for the JC Virus in the past and my result was positive. Is anyone else in the same boat? Did you decide to take the risk, or did you pick another medication? Thanks so much in advance :)

sophie447
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Re: Anyone carry the JC virus and take Gilenya?

Post by sophie447 » Mon Jul 11, 2016 5:45 pm

This is probably way too late for you, but I do. Found out I am JVC + way after starting Gilenya. I was curious about my status as I knew I will most probably need to switch meds at one point. Not sure ow I feel about it. The risk of PML is quite low, especially if compared to Tysabri, but it's still there. Just chose to ignore it and stay on Gilenya.

I was on Copaxone before and just HATED it. Hated to bruises, the pain, stinging, etc. On top of it, I just kept getting new lesions. Gilenya seems more effective (after 2 years), as I have not gotten any new lesion. No side effects that I can feel, just a little bit low lymphocytes count. Hoping it gets better on my latest blood test or will have to lower the dose.

Wish you the best.

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