Trying Gilenya

[pappmorris]

Thinking about trying Gilenya. Sec/Progressive. Read a lot of negative things but looking for people that have had positive results and what type of side effects.

3 1/2 MOS ON GILENYA

I HAVE BEEN ON GILENYA 3 1/2 MO'S AND SO FAR I ONLY HAVE HAD A RUNNY NOSE X2MO'S. ALSO DIARRHEA X2 BUT THAT IS WHEN I MISSED A DOSE AND TOOK FOLLOWING AM. NO OTHER SIDE EFFECTS. I NEED EYE EXAM IN JAN FOR MACULAR EDEMA, SO FAR I HAVE NOT NOTICED ANY EYE CHANGES. I HAVE BEEN THE SAME W/ MY MS X2 YRS SO IM NOT EXPECTING A MIRACLE. IF I DO NOT GET MUCH WORSE I WILL BE HAPPY.

TASHA DX 1995

[Miss Kate]

I have been on Gilenya for about 6 months now and have had no issues with the exception of some back pain on and off. I am suffering from a flare up that began about a month ago but is not thought to mean that the Gilenya isn't working. I have had 2 follow up eye exams to check for macular edema and both have come back clean with no issues at all. For the first month or so I did get some headaches but they were nothing that advil couldn't take care of.

On an MRI that I had done after about 3 months of being on the Gilenya I had no new lesions and many of my old ones were gone. I have a few that were still active but my neuro said that it takes about 6 months or so for Gilenya to be fully active in my system and so my next MRI in April should be the one to tell whether or not the Gilenya is right for me. However he said the fact that I am already having better MRIs is very positive.

Obviously the decision is yours but I am hear to say that aside from those few hiccups I am very happy with being on the Gilenya. Betaseron did nothing for me except leave me with welts from my injection spots so hopefully I can stay on this and not have to worry about needles in the future. best of luck to you with whatever choice you make, I hope that it is nothing but successful for you

***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

[Gorman]

Possible first time user - Gilenya

I was on Copaxone for 9 years, then Rebif. Now, will try Gilenya. I've read about the low heart rate and death so am a bit worried. Thanks for you feedback as to how you tolerated the "pill"

Gilenya - do the benefits outweigh the side effects?

[helen_908]

5 weeks on gilenya

I have relapsing remitting ms for the last 20 years. I was on avonex for the last 10 years and just got sick and tired of injecting myself, so i went on gilenya 5 weeks ago. I have had absolutely no side effects. blood tests came back fine after 3 weeks and i feel no different. Good luck.

[atsmhn]

Other side effects from Gilenya?.

I was told that there were stroke effects reported as well. I have not been able to find this?

I just had a terribe inflamatory reaction on Copaxone after 2 years. Has anyone ever had this problem? I'm not sure the risks are worth it for starting G?

[michiganmsbiker]

HI, MY WIFE HAS BEEN ON GILENYA FOR A LITTLE OVER A YEAR NOW. NOT HAVING ANY OF THE MAJOR SIDE EFFECTS THEY WARN YOU ABOUT. HAD A LITTLE PROBLEM WITH ACNE, BUT WAS MOST LIKELY DUE TO SOME POISON IVY SHE CAME IN CONTACT WITH THAT WOULDN'T GO AWAY.

[atsmhn]

Hello,

I'm glad she is doing well on Gilenya, I need to hear about the possitive results.

[lovejoy]

STARTED IT AND THERE IS AN INSURANCE PERSON WHO KEEPS SCREWING AROUND SO NOW I HAVE TO REDO THE 1S T DOSE AGAIN SO I PROBABLY WON'T DO IT FOR AWHILE. THEY TOLD ME TRICARE DOESN'T COVER IT , WHICH IS AN OUT AND OUT LIE, SO I REPORTED THEM TO TRICARE SO WE WILL SEE WHAT HAPPENS..HAVE STOPPED A FEW DRUGS AND IT SEEMS LIKE I FEEL BETTER, THEY PROBABLY PUT CRAP IN THE DRUGS TO MAKE YOU FEEL BAD AND HOPE YOU BUY INTO THE "LINE" IT TAKES TIME

[lovejoy]

Following up om the Gileynia pill, Tric Care Called Gileynia and Gileynia has been calling me back nonstop wanted me to start taking there posion now they are relentless in calling me go figure LOL