anyone here have been using gilenya for 9 months or more??

[jlander1222]

JC Virus

Yes, I am curious about the JV virus issue also. I tested positive as well, so Tysabri was not an option for me. That is why my Dr. is suggesting Gilenya. ANd, I did not see anything in any of the literature or PI indicating there is any connection. I'll contact neuro and see if I can get an answer.

Meanwhile, hope you start doing well.
Jill

[laurasari]

jc virus is not a factror in gilenya it is in Tysabri. after being on Tysabri for 30 infusions i was found to be positive and taken off and put on Gilenya like many others.

[Gorman]

J C Anti Virus

I'm in 'getting ready stages' to take Gilenya. One of the things I had to do was to have blood work done to check for J C Anti Virus, which was positive. That being the case, Gilenya is the only option as Tysabri isn't an option due to positive J C test, which 60-80 % of population has.

I stumbled upon this site today due to concern over Gilenya and it's side effects.

Thank you all for posting your comments. I began the year thinking I would soon die due to taking the 'pill' and lower heart rate, etc. After reading posts, I feel 100 % better. Thank you all.

[1tennisgirl]

Wish I never had this dang disease!

I'm in 'getting ready stages' to take Gilenya. One of the things I had to do was to have blood work done to check for J C Anti Virus, which was positive. That being the case, Gilenya is the only option as Tysabri isn't an option due to positive J C test, which 60-80 % of population has.

I stumbled upon this site today due to concern over Gilenya and it's side effects.

Thank you all for posting your comments. I began the year thinking I would soon die due to taking the 'pill' and lower heart rate, etc. After reading posts, I feel 100 % better. Thank you all.

I am scheduled to start on Monday. Heck with 12/21/2012!! I am looking at 4/30/2012 I can't say this has completely put me to ease! Does this mean we need to walk around with masks on to make sure we don't catch a simple cold? I am so sick of MS!

[slowdog]

I have been taking Gilenya for 14 months now with no side affects except in the beginning of taking it I had a little more fatigue do to slower heart beat but not extreme fatigue where you sleep all day.

[metwo]

no new lesions

I've been taking Gilenya for 18 months. I had one relapse 3 months after starting but nothing after that. I had fatigue in the first few months which was more than my usual MS fatigue and I had some back pain and hair loss. All of these have resolved except for the hair loss. I have no idea if it is the Gilenya causing it or something else but I'm ok with this since my last MRI after 12 months of being on Gilenya showed NO Changes ! This was the first time ever for that to happen. The side effects compared to interferons are a huge improvement. I did not have a life on Avonex because I had so much pain for days after each shot and I had an allergic reaction to Copaxone. I am scared about the long term effects but I'm willing to continue because my MS is in remission on it so far. Quality of Life is much better.