Wednesday, December 21, 2011

FDA MedWatch Alert for Gilenya

Just by chance, I opened the FDA MedWatch alerts page for prescription drug recalls or problems (remember the alcohol pad recall?), when what to my wondering eyes should appear but the word "Gilenya" and my gut filled with fear.  I'm patiently awaiting the rest of the story...

This was issued Dec 20 2011.
 The FDA has received a report of a patient with multiple sclerosis (MS) who died within 24 hours of taking the first dose of Gilenya (fingolimod). At this time, FDA cannot conclude whether the drug resulted in the patient's death. FDA is continuing to evaluate the case and will communicate any new information that results from this investigation.
I'm not worried because I've been on Gilenya for two months, but I will be watching this story.


  1. Hey Joan--

    I am getting prepped to go on Gilenya myself. So sick of needles that Gilenya doesn't much scare me. Just waiting for insurance clearance and some kind of financial help (we have a steep annual deductible to meet in January, and right now Betaseron funds it.) So we'll see.....can't wait to swap war stories with you (and I'm glad to hear that Gilenya is going well for you thus far.)



  2. Hi Jen, I'll be interested in hearing YOUR experience.
    There is a Facebook Gilenya users group, at!/groups/131619336888138/
    But each person has conflicting side effects (for example: one gains weight, one loses weight, one has no change), but it's a good collection of G users.