Gilenya ????

[ed1111]

I have had MS for at least 8yrs. I would appreciate any comments pro or con about Gilenya. I am presently taking this medication for MS.

[ed1111]

Thank you all

[ed1111]

Thank you very much for the comment

[doublevision1]

I switched from Copaxone to Gilenya last August. Although my neurologist wasn't particularly concerned about my MRI changes, I was, and asked to change meds. I didn't mind the daily shots of Copaxone, I'd been on it long enough that I no longer had site reactions. I was just concerned it was no longer working as well as it had in the past.

I've had no major side effects from Gilenya. A bit of headache when I first started but that didn't last long. No digestive problems. No infections. No cardiac complications. My lymphocyte count was a bit low but that's entirely expected. My liver enzymes were good; that was the thing I was most concerned about. I have a MRI scheduled in March as part of my follow up.

Gilenya is much more expensive than Copaxone where I am. Fortunately between my employer drug plan and my provincial government health plan, I pay no deductible nor co-pay out of pocket.

[TLC_31]

Shortly after it came out, I tried Gilenya for 19 days, mainly because of my needlephobia. It seemed to adversely affect my heart, and so I went back to my previous tried-and-true Avonex therapy. But many people report good results; in fact, I still am a member (although only lurking) of the "Gilenya (Fingolimod) Users Support Group" on Facebook, perhaps what Califunny refers to, and I would heartily endorse you joining.

[cimini]

I have been on Gilenya since it came out, 4 or 5 year ago. It is much better than the other drugs I'd been on, Rebif and Avonex. Those made me feel terrible and had horrible injection site reactions. Gilenya has not caused me any digestive problems. I did loose some hair for the first year or so, but not too bad. Also, though it is not listed as a side effect, I have had joint problems that came on just since starting gilenya. My knee, then my neck, then my back cause me problems now and I have had terrible sciatica for the past 3 years. But again, I can't guarantee this is from the gilenya. I loved switching to it. It is very convenient. ONe other thing, when I started was that I would wake in the night drenched in sweat, but that stopped within the first year, probably. Good luck!

[CaliFunny]

There's a great Gilenya support group on Facebook. People are on there that have been on G for many years. It's a very helpful group with lots of experience between all the members. You can post questions there too.

[HVAC]

I have only heard of digestive problems.

Alex