Forum

Gilenya

Hello,

I have just been given the results of my recent MRI and I have 2 new lesions. My neurologist has recommended Gilenya. I wondered if anyone has any experiences of this drug. I have taken Tecfidera but had an allergic reaction to it. Would appreciate any advice.

Annabell

Sorry I can’t advise you on Gilenya as not on it but I am on Tecfidera and just wondering what your allergic reaction to it entailed. Hope someone can help you.

I had an anaphylactic reaction to it and had trouble breathing. This was about 2 years ago. I haven’t taken anything else since.

That is why I am now considering Gilenya.

x

I’ve been taking Gilenya every day for at least 6 years (I was on a clinical trial before it got NIHCE approval). I didn’t suffer any serious side effects, but you may wish to check the drug information online and discuss it with your neurologist or MS nurse.

I was on Betaferon for 5 years and came off it because of problems doing the injections. (I was also suffering depression caused by the drug but I didn’t know this till I stopped taking it.) One capsule every morning is much easier.

Thank you for your reply.

Im due to see my neurologist in January to discuss it further. I’ve read about the side affects and feel quite concerned about them. I was interested to hear other people’s experiences of Gilenya and if they were happy with it.

Annabell