holy cow...thats scarey lynn,,,,,im not ever going to try that med.i guess it will be pulled off the market soon,,,,,i hadnt heard of it..thanks for posting this!!!!!!!!

I had seen this. Thanks for posting here and bringing it to everyone's attention. Scarey stuff! I'll stick with the daily injections.
Thanks! Linda

The Swiss pharmaceutical company Novartis says last November it was "notified of the first reported case of a patient death that occurred within 24 hours after receiving the first dose of Gilenya." In a statement to CNN, the company says the cause of death remains unknown. Ten more patients taking the medication have died, due to sudden death, heart attack or disruption of the heart rhythm, according to Novartis. "As noted by EMA, it is currently not clear whether these deaths were caused by Gilenya or not,"

This is very scary!! I hope they pull this drug (or whatever it is) off the market soon.

They will NOT pull this drug but what they will do is have everyone who takes it sign a disclaimer (kind of like Tysabri). Many deaths from that but much benefit for some as well so it is another do it at your own risk kind of thing. Ah Science, never exact again freedom of choice!

Ive been taking gilenya for bout 5 mths with absolutly no side effects..yes the risks are scary but I wanted to know if this medication will work for me or not...every pill we pop in our mouth has a side effect..some tolerable some death but this is where u as the patient decide if the pros outweigh the cons...

Was going to post this then I see you already had.

Thanks,
EP

I have been on Gilenya for about eight months and have only had some fatigue, which has gone away now that I take the pill later in the day. It is scary, but I have to agree that just about every drug has side effects and we take that chance to live a better life.

I decided to skip this drug even before it came on the market. I was taking Tysabri and was doing well on it. When I read about the new oral pill that was coming out, it only took one reading of the side effects for me to decide it was not for me. Primarily it is the effects on the heart and eyes. I could not risk this. My heart is about the only thing that works well on me these days, so I am not messing with it. I already have Glaucoma, so this was yet a risk factor that I considered as well. I have read that many neurologists are advising their patients to remain on the CRAB drugs until more is known about some of the new ones. It is a shame however because once someone has gone through the CRAB drugs, then what? Every person is different, so the symptoms must be treated differently IMO. In another article I read this is where the MS research may be focused in the future. It makes sense. What works for one may not work for another or have the same effect. MS is one tough disease. Whoever invented this disease did their homework! (I have an odd sense of humor)

Thanks for the post.... OH... I am about to start gilenya in a few weeks, I was on Tysabri and It has done its job..... BUT because I tested positive for the jcv virus and have been on it over 2and half years I thought I should.......WHY CANT ANYTHING JUST BE CUT AND DRY
(sorry to yell.... lol)