Why Gilenya?

[Rosie Girl]

My recent MRI showed evidence that Avonex is not working for me any more. My neurologist said my options are Gilenya, Tecfidera, or Tysabri. Copaxone had too many side effects for me.
Why did you choose Gilenya?
What have you liked most about being on Gilenya?
What have you liked least about being on Gilenya?

I am looking for information (beyond the brochure) to help with my decision. Thanks for the input!

[angel22_99]

Quite simply, I chose Gilenya because I am not fond of needles. I like it because it is just one pill, I take mine right before bed. I have not had any side effects (maybe weight gain, but I can't prove that is the Gilenya!).

The only thing I'm a little disappointed in is that I have seen no change in my day to day symptoms. I still get tingling in my legs and leg pain (Can't prove the pain is MS related either, i'm in acupuncture for that right now regardless of the cause). It's also really expensive, my insurance actually pays close to $4,000 a month, but Gilenya covers my portion of it...but I believe all the MS meds are around that price.

Anyway, I like Gilenya and I plan on staying on it as longs as I can.

[newbie but goodie]

I chose G because I couldn't deal with the shots anymore and I wasn't feeling better anyways nor were my MRIs looking real great. Plus I was JCV+ and too scared to do Ty. Tecfidera was not available at the time.

I like the fact that it is in a pill form and I feel much less medicalized. (I know I am just as medicated but I feel less like a patient). I also like that many of my symptoms have lessened or disappeared.

I like the concern about infection the least. I struggled to end a UTI over the summer. I'm told that a different med was exacerbating the UTI and that was the reason but I'm not convinced.

Hope this helps

[piper.tillie]

I'll be watching this thread closely as I'm in the same boat as OP. Hoping that G will be the change we're looking for"

[Temagami]

No shots, no welts, no itching, less storage hassle, but it does have a temperature range. Has now proven to be the best oral drug with regards to decreased relapse rate and postponement of brain atrophy, which is correlated to disability. This claim for decreased brain atrophy is whether or not there are clinical sx. No new brain lesions since starting (new cervical ones though). Some hair loss. No other side effects other than very low WBC- moved to alternate day dosage.

[dolule]

I started fingolimod/Gilenya as part of the clinical trial because I couldn't tolerate the interferons any longer and had become more disabled while using them. I wanted something more effective than copaxone. I loved they idea of not having to inject.

What I like most is that Gilenya has really worked for me. I have not had a relapse since starting the drug in Jan 2007 and my level of disability has not increased (and sometimes I think I'm slowly improving). With the exception below, I have no side effects whatsoever.

Okay, what I like least is that I've had shingles once and herpes simplex outbreaks frequently since staring the drug. (I was already carrying the viruses for both when I started the clinical trial, but had not been aware of the herpes simplex). Since my husband also tested positive for the herpes (without symptoms) and my outbreaks are pretty mild, this has been an annoyance rather than a major problem.

If I'd known before I started the Gilenya that I'd end up with shingles or herpes outbreaks, I probably wouldn't have chosen it -- however, I'm glad I didn't know because I am really happy being on this drug in spite of the infections.

[Shiranova2003]

I started Gilenya on Aug 14/13 after taking Copaxone since 2008. I didn't mind the needle AT ALL, however, I was progressing after year 4 (with new symptoms). No side effects.

With Gilenya I am experiencing hair loss (isn't too bad cause I've got lots of it). This has unnerved me a bit - the pill is really small and it's obviously doing something in my body (evidenced by hair loss). It's a little scary how long the list of side effects are that could happen. Judges are still out - I'm considering going off meds although and just following a Mediterranean diet.

[dolule]

correction

...

Okay, what I like least is that I've had shingles once and herpes simplex outbreaks frequently since staring the drug.

...

UPDATE: I thought I was having frequent herpes outbreaks because I have pain in the same spot as when I had the initial outbreak; turns out there is no herpes lesion and I am simply experiencing neurogenic pain (which I attribute to the MS and not the Gilenya).

[TaoWarrior]

I'll be honest I got on it during the clinical trial because I lost insurance and needed some sort of DMD that I could afford. The trail was a crap shoot because I could have gotten placebo but based on heart rate and BP during the initial dosing the best guess is I hit the jackpot and got the real drug.

So now 5 years later still on it. Still happy with it. Is it perfect no, but it beats the pants of Avonex which was my prior drug. No shots, no day after flu, and fewer relapses. I have not had weight gain or hair loss. I do get sick more frequently and it takes longer to shake off a sickness. I got to experience my first ever UTI so that was fun too. Overall though the good outweighs the bad by a pretty big margin.

[helen_908]

my gilenya experience

ive been on gilenya for about three years. i was on avonex before that for ten years and did my own injections once a week until i injected into the main nerve in my leg which meant that i couldnt inject into that leg anymore. which meant that i had to get someone else to inject me every second week into my bottom. so because i lost my independence doing my own injections i asked to go on gilenya and my neuro allowed it. its been fine, i havent noticed any difference, no attacks, no illnesses, no infections...i would be interested to have an mri to see if there is any difference in lesions on the brain but my neuro says that if im not having attacks he wouldnt change my medication...so im happy to stay ignorant for now. ive had ms for about 25 years. my symptoms are fatigue and my left foot has foot drop that i wear an afo on if i go out and my left knee buckles in, which i am trying to improve with knee exercises. hope thats some help