Morning So after a failed attempt at rebif and more relapses, my neuro is starting me on gilenya. I’m going in to hospital on the 28th April for my first dose. Feeling pretty anxious about it all, not sure what to expect, but very grateful I’ve been offered something! Tried to search old posts, as I know this has been discussed on the forum a lot, but the search only showed posts from 2011?! So just asking others who have been on this drug for their experiences, did you get any side effects, if so what were they? Most importantly, has it stopped you relapses? Also worried about the suppressing of the immune system, I’ve got two young children, and I pick up every cold going. Got one now which is needing antibiotics to clear. Is this likely to happen more often on gilenya? Many thanks Lx
Hi L
Here’s the thread I started when I had much the same question.
http://www.mssociety.org.uk/forum/everyday-living/anyone-else-fingolimod
I’ve been on it since November and haven’t had any side effects. I’m on my second cold since that time and I wouldn’t say they are any worse than they ever were. When I’m having a bad spell everything goes to my legs anyway so no change there! I have recently had a letter to say my lymphocytes are very low (they are the white blood cells that fight off infections) but I still don’t think I’m picking up infections any more frequently than I did prior to starting Gilenya. Last winter for instance I picked up 5 vomiting bugs! My neuro has said that while I’m still relatively well he won’t stop me taking Gilenya because of the risk that my MS will get worse. I will have another blood test in June and we will discuss it again in clinic.
Good luck
Tracey xx
Thanks for the link Tracey, don’t know why my search turned up posts from years gone by?! Good to know you have not had any side effects, long may that continue! I guess I’m never going to be able to avoid picking up bugs, so just have to hope for the best. Just always a bit scary stepping in to the unknown, plus it’s all happened pretty quickly (by nhs standards!) , it’s thrown me a bit! Will have a good through the link now, thanks again 
Lx
I know it’s scary but at least it is happening quickly for you . You have less time to worry, ha ha!
I made the decision in August but for some odd reason my first ECG showed an abnormality so I had to have a full heart scan. That was the scary bit for me as there was a lot of heart disease in mum’s family and we lost her 2 years ago to heart failure so you can imagine the state of me on the day of the heart scan! In fact they couldn’t start it until I forced myself to calm down as my heart was hammering away! I finally got the go ahead in November.
In the end, on the day I had the first dose of Gilenya it was a total non event. Just a long boring day hooked up to a heart monitor with no excitement except for the odd occasion when my good looking neuro popped in to check on me . Well, there have to be some perks lol!
Hope it all goes well for you too
Tracey xx
[quote=“elmo”] except for the odd occasion when my good looking neuro popped in to check on me
[/quote] Certainly an effective way if getting the heart rate up! Lol Think I’m going to enjoy the rest to be honest! X
Ha ha, yes and the heart monitor gave the game away lol I used the time to catch up on some reading, puzzle books and had a little nap before I drove home. Like you say, it’s not often I get the chance to sit and do nothing so that was a bonus. Tracey x
Hi
I haven’t been as lucky as you Tracey, I started it in January and am already having a relapse, optic neuritis. Currently on steroids, hence the post at 2am! I also get some rather painful back and shoulder aches. I’ve been told that this could wear off though. Hope so. Uncomfortable during the day but a real nuisance at night, ditto the post at 2am! Lymphocyte count also low and I’m waiting for the results of a repeat test.
having said all that, I really want to stay on it. I think just teething problems and things will settle down in time.
Agree with the thumbs up to the 6 hour enforced rest, it was fabulous, should be available on prescription!
Best of luck,
Cathy
Hi Cathy, sorry to hear your in a relapse at the moment. Thanks for your input on gilenya though, it’s good to hear different experiences. Hope the teething problems settle down for you soon. Lx
I’m firmly in the negative camp. Started it in May 2013 after nine overall good years on Rebif but I had two relapses in 2012 hence the move to Gilenya after my first new MRI scan since diagnosis. I felt like it had stopped working for me and was grateful I’d been offered something else. I have had three relapses since being on it. Spasticity, which was only ever a minor issue occasionally, is absolutely horrendous in my lower back and calves and I’m just a lot stiffer in general. Pain is increased. Recurrent bouts of optic neuritis. Swallowing problems (totally new thing) Short term memory is awful. Foot drop, again a minor problem, is a lot worse. I am still walking unaided though. I think I’ve worked about four full weeks this year - it really is that bad. The only good thing is I haven’t had any of the infections and my fatigue is still under control. It was sold to me that the first person to try it at my NHS Trust was like a new person within a week - skipping out of the appointment I was told. It would appear now that everyone else since is coming off it/has already done so. I’m also going to leave work later this year because it’s becoming too much of a struggle. I’m lucky that my OH has a good job but it’s still going to mean that we have to move to balance out the loss of my wage. I feel I have significantly deteriorated on it and I’m currently awaiting the results of a new MRI scam and referral for Tysabri. I don’t want to, as the thought of PML terrifies me, but it’s now over fourteen years since my first relapse and I feel it’s the only thing that can save me and my walking now. There’s no point going back to first line treatments. I don’t think I’m near SP yet but I do believe there is a very small window of opportunity to stop this happening. I have always been very positive about having MS and I hate the whiny, negative person I seem to have turned into (I hate whiny, negative MS people!) but the last two years have not been great. I know this isn’t what you want to hear but I think you need to have both sides of the story. I joined a Gilenya users group on Facebook and that’s just full of positive stories and people loving being on it and I just felt like a freak.
Hi anon,
Sorry to hear that gilenya hasn’t worked out for you. You are right that it’s important to hear the bad, as well as the good experiences people have had, so thanks for sharing. I really hope that what you try next helps to keep the ms in check, and the next two years are more positive for you.
Good luck
Lx
Not sure why that posted as “anon” but thanks Leora
Seeing my MS nurse on Thursday next week. It will have been six weeks since my MRI by then so I’m hoping I’m going to get the referral to Addenbrookes I need. However, she hasn’t returned any of my calls since then and, despite the neurologist I saw in January telling me she was going to refer me whatever the new scan results were, the letter she wrote to my GP tells a bit of a different story. This isn’t even an appointment that’s been made to discuss the results - it’s my six monthly review that’s been in the diary for ages (only saw the neurologist in January as an emergency referral as that was during my third relapse)
Whatever happens, I cannot stay on Gilenya. I have to get that referral to Addenbrookes. Right now, it feels like I’ve gone back ten years to the bad old pre-Rebif days.
Hope it works out better for you
All I can say on it is bloody marvellous drug been on it 2 weeks and with each day I noticed improvements and I don’t think its wishful thinking.
Saying that I went to pick up 2nd batch from Hospital and met a friend on it who started and he’s complaining of more cramp and severe virtigo on it.
Like with all these drugs people react differently to them.
There is a Gilenya facebook page with thousands on it and some for years, its closed to public so what you post public can’t see it only members.
Its a good place to get honest anwsers in a few mins.
Thanks for the link Hobs, glad it’s going well for you! Twecale tart I hope you get the referral you need on Thursday, good luck. Lx