Forum

Fingolimod Advice

I have been offered Fingolimod as an alternative treatment to my Rebif Injections. There appears to be a lot of risks associated and I am looking for feedback from anyone who has experience of this treatment to help me make my decision??

Any information would be appreciated

Thanks

Kelly

Hi Kelly, I switched from Rebif after nine overall good years to Gilenya a year ago after I had two relapses in 2012. For me, it was a huge mistake. Four relapses later, I came off it last month and I’m seeing a new neurologist at the end of this month as I want to go on Lemtrada. Currently not on a DMD. Saying that, it must have been doing something as i) my latest MRI scan shows no change from the one I had before starting Gilenya ii) I still feel rubbish being off it but that’s more to do with being off a DMD after ten years I think - it’s just a general feeling of fatigue and exhaustion rather than symptoms - and iii) I didn’t get any colds or infections which are common on it. There are people on here who have had good experiences with it and hopefully by bumping this, you’ll get some responses from them. Good luck with your decision x

I have been taking Gilenya for three years now.

When I started I had some chest pain but that resolved itself. Other than that I have had no side effects.

On the positive side, I have had no relapses or progression since I started which is all anyone can ask for I guess!

I would recommend it

Hi kelly

I switched from Rebif to Gilenya last Oct and feel like I have my life back ! Hated Rebif, relapsed twice within first year on it, had injection site reactions, felt fluey every day the day after an injection. Still have marked skin and muscle wastage where I injected. Consultant offered Gilenya as next step. Risks did scare me but the pros outweighed the cons for me. Am now part of the research data that`s colllected on Gilenya and I contribute to that every 3 months.

Day in hospital to start the treatment is pretty full on but very well thought through and thorough. I had only mild dip in heart rate on the day. I do have low white blood cell count now ( in first couple of months of taking Gilenya it was very low and I nearly had to come off it) but it doesnt affect me at all. I work with kids, in high risk environment in terms of picking up bugs etc and havent felt its been an issue at all.

I have the same symptoms with my MS as before . Same highs and lows but personally I feel so much more in control just taking a tablet and thats been invaluable for me and my mindset. Hope that helps. Also felt more supported by MS professionals as the first year is so well monitored.

Hi Kelly, I’m also about to start on Fingolimod after 12 months on Avonex and previous to that 12 months on Copaxone. I’m worried about infections and I wonder whether the Amantadine I take will offer some protection because it is also an anti viral medication? It’s good to hear so many positive experiences from people already taking Gilenya. If you want more feedback there is a Facebook group for Fingolimod users that is good. Best wishes

Hi Kelly I’ve been on gilenya a few months now. Had a little breathlessness in the first week or so but it settled down. The only other side effect I’ve noticed is some mild hair loss (not loads but enough to notice it’s happening). It’s so much easier than injecting and for me compared to how awful I felt on rebif, it’s amazing! Good luck with your decision, I agree with 0440rob the FB page is really helpful.

Hi Kelly

I switched to Gilenya in November after two relapses whilst on Rebif last year and so far so good. I do feel the cold a little more than I used to which was strange at first as I had spent the previous 4 years overheating easily!

I caught two colds in the first few months but they didn’t turn into anything major which had been a fear. I’m asthmatic so was worried I may get chest infectons …

My last blood test showed that my lymphocytes were very low but my neuro wrote that he didn’t want me to come off Gilenya while I was feeling okay. I have another appointment and blood tests tomorrow so we’ll see what happens then. My glands aren’t so swollen now so hopefully it means things have settled. I’m not unduly alarmed as this is the way the drug is supposed to work, by trapping T cells in the lymph glands. (I think … from memory!)

I have had a bladder infection recently but that is not unusual with MS so I’m not reading too much into that. I’m hoping that when my body gets used to the drug, I can concentrate on recovering the full use of my legs over distance. They’re improving a little every few weeks but I’m not very good at this patience thing …

Good luck whatever you decide

Tracey xx

Hi Kelly

I’ve been on Gilenya since April 2013. I was previously on Rebif but was having relapses so I switched to Gilenya. Since then I have had no relapses and no side effects. Very glad I switched. Good luck with whatever you decide.

JZ