Last reply 3 months ago

Iv had MS for 11 years, iv recently had my first relapse since being diagnosed, I’m on Conpaxone injecting 3 times a week, but my neurologist wants me to try fingolimod has anyone been on this medication? Also what’s it like? Thanks guys x

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4 months ago

@stacey , a “Gilenya” tag has been added automatically to the bottom of your post above.

Selecting this tag, will access all previous conversations about Gilenya, aka Fingolimod.

4 months ago

i have been on it for 4 months. It is more effective than avonex which I was using before gilenya. I am not having much side effects other than feeling hungry all the time. I have also started losing my hair.. I am so far okay but worrying about the other hidden side effects….

4 months ago

Hi @stacey. I switched from Copaxone to Gilenya/Fingolimod 6wks ago at my neuro’s recommendation after my most recent MRI showed a new active lesion. I’ve had no problems with Gilenya at all. There were a lot of tests I had to get done before starting (ECG, JCV blood test, normal blood count, eye test) but they were simple. The first day dose had to be done in hospital so I could be monitored for 6 hours – I was actually disappointed when they said I could leave because I’d had a lovely uninterrupted day to read books and watch some netflix!! Haha. The neuro told me I can’t get pregnant while on it, so that’s one thing to keep in mind. One thing I read about after starting it, but the neuro didn’t tell me, is that you can’t get any “live” vaccinations if on Gilenya. This includes the yellow vaccine, which is required for travel to Africa and South America. If I had my time over, I’d get the vaccine done before starting the med, as I would love to travel to those places 🙁
I read a lot of the scientific literature about Gilenya, and despite the many risks and considerations that get mentioned by docs and online, I decided that the evidence in the literature confirmed that it is a very effective DMT compared to Copaxone, so I decided it was worth the risk to keep my MS at bay!

3 months ago

If you don’t mind me asking how often do you have to take this drug?

3 months ago

@stacey It is a pill you take daily.

3 months ago

@stacey – It is likely that your neurologist is keen to move you to more modern treatment. The efficacy of Copaxone – which used to be one of the few available options – is far outweighed by the current crop of more modern treatments.

Nothing to be concerned about. MS is dreadful, even if it isn’t showing its face, so to speak, so getting it as soon as possible and as hard as possible is key to doing the most to mitigate your long term progression.

3 months ago

Had MS fir 15 years got atrophy but still rrms
Stopped meds 9 years had interferron 2008-2011
Got my second relapse with it still suffering from it

I started gilenya maybe 9 months ago
Its cool no side effects so far
I notice my balance is embarrassing me more probable because MS is aging after 15 years

3 months ago

Hi @stacy I’ve been on gilenya/fingolimod for nearly a year since being switched from tysabri. The move was all down to my Jc+ figures, it’s only a single tablet taken daily. I’ve not particularly seen any side effects although that’s not to say I’ve not had any. The first tablet has to be taken in hospital as it has a remote chance of slowing your heart and after all it’s better to be safe than sorry.
Graham xx

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