Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMSTeam Member asked a question πŸ’­
Pleasant Hill, MO

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!! πŸ˜–πŸ˜ŸπŸ˜±

November 15, 2014 (edited)
 · 
Reactions
A MyMSTeam Member

Agree w you keep looking up

May 20, 2015
A MyMSTeam Member

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

May 17, 2015
A MyMSTeam Member

I don't think it was a routine case either. I would suggest you discuss it with your neurologist.

November 16, 2014
A MyMSTeam Member

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?!

May 20, 2015
A MyMSTeam Member

Thanks for info on jcv testing too

January 24, 2015

Related Questions

View All
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In