I am on Gilenya now for 11mnths was on TY for a little over 4yrs but had to switch due to JC+ I loved TY it worked wonders for me. But now I have read that a person who was on Gilenya has died from PML!! I guess my question is has anyone heard about this or know anything about it? I am freakin out a little cuz the gilenya seems to be working. Rebif, Copax & techfidera did not work for me. The 2 things that have worked & worked well coulde possibly kill me!! πππ±
Agree w you keep looking up
So Jessica, How are you doing? It's been a while since we posted about JCV and TY. I just went for bloodwork to see what my level is and I have an MRI coming up this week. I'm crossing fingers as I too, want to stay on this drug. It's worked better than anything else so far ! Saw my neuro and we had a long chat as I just had my 16th Ty infusion. He said not to be alarmed if I have to come off and his drug of choice at that time is Aubagio. I must say my only worry is that I've read there is some hair loss on it and I cannot afford to lose anymore!! Doc says it's only temporary and comes back. Yeah, well he's bald so what does HE know !!! Lol !! AND he did mention that they've found some cases of PML with Gilenya. UGH. Cross your fingers....keep looking up, and let us know how you are. <3
I don't think it was a routine case either. I would suggest you discuss it with your neurologist.
Jeez KimT4193 it stinks but your comment was helpful to me again. Figures bout newest drug I'm on causing same junk. How r we supposed to b helped?!
Thanks for info on jcv testing too