Forum

GILENYA, Anyone taking it?

Is anyone here taking Gilenya and have any feedback on how they feel etc?

If anyone else is on the Gilenya list and interested on outcomes check out these places

https://www.facebook.com/groups/GilenyaSupport/

This is very useful maybe MSS could get something like a drug diary set up?

http://www.ms-uk.org/index.cfm/gilenyadan

Hi, I’ve just been on it for a month. Initially was a bit worried as thought could be relapsing already but nurse seemed to think it was the settling down of my system and the adjusting to new medication. Have been fine since. Tbh, I didn’t realise how crap I had felt for years til I came off the Beta interferon injections. Gilenya is like another world as feel so much better. No side effects at all so fingers crossed it works!

Glad it’s working for you and your also feeling better on it. I’ve been reading more people saying they feel better than not

Been on it just over two weeks and feel like I’m relapsing so Tiny B’s post is very interesting. Just read the same thing on a Gilenya support group on Facebook. Also it could be being off Rebif for three weeks and Gilenya taking it’s time to bed in. I really hope things improve soon. I have been dragging myself into work but, outside of that, I’ve been pretty much holed up in my flat all year. I just want some quality of life back so I can get out and do stuff - not climb Everest but just go out, do something enjoyable and not feel like crap. Also want to restart the Pilates I was doing three times a week eighteen months ago to get rid of some of this damn steroid weight!!

Im 2 weeks in to my gilyena treatment and its all good so far. Bit of acid reflux but thats controllable apart from that feel great and loving not having to inject.

Oh I didn’t know about the acid reflux thing with Gilenya, I know Amantadine can do this though.

On it now three mths all good, apart from heart burn:-(

Ugh! I am really NOT loving Gilenya so far! :frowning:

Hello

I’ve been on Gilenya for six weeks now and I feel absolutely fine. No side effects at all. My left leg, which is normally very weak, has been a lot stronger for the last month. Don 't know if this is a natural remission or if it’s the Gilenya (but it’s a bit of a co-incedence if it’s not). Beats injecting and all the nasty side effects any day.

JZ

Spoke to my MS nurse yesterday as I feel like I’m relapsing - optic neuritis, pain, fatigue and foot drop - all stuff that’s been on and off this year but relatively under control. Now affecting me in one massive hit! She is going to speak to the drug company and my consultant. Told her it seems to be an issue for some people when first starting. She is coming back to me. I am only the 3rd or 4th person to start this at my hospital and she said only 5,000 people approximately are on it in the UK - that’s about 5% of the MS population - so I think it’s still a bit of an unknown quantity. Went to work today for the first time since Thursday and wished I hadn’t :frowning:

I have been offered this today, need to do some research, but sounds promising from your comments xxx

There are lots of positive comments about Gilenya on the Facebook group Hobs has linked too - mainly Americans on there - which is encouraging me that things will hopefully get better soon.