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Just had my annual appointment and my neurologist wants me to try Gilenya. I'm a little afraid since I'm JC Positive so I'm just looking to see if others are JC positive and on this treatment. Is Gilenya worth the risk? How does the treatment make you feel? any side effects?
My nurse told me that they would send me for bloodwork every 3 months and if they see anything worrisome they would send me every month, they also told me I would go for brain MRI every 6 months. With them taking these… read more
I will do stem cell if anything. But, that's it.
I, too, am JCV positive, and therefore, will not use any DMT's. Not worth the risk. A family member became PML positive. Now in nursing home fighting for her life. I won't do it. It's up to you, but too scary.
When you are JCV positive, your chances of getting PML drop to 1 in 500 according to my neuro. Again, it's your decision.
No I hear you guys , I also was staying away from any treatment with that risk, but I'm in my 13th year with MS and I now have visible disability and was just wondering if Gilenya was worth the risk. My nurse told me out of 150 000 people 4 of them developed PML.
Absolutely. Low stress....
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