danrb80 11/04/15
Last reply 3 years ago
Gilenya for me

So I have stopped Rebif thankfully after side effects over a year in. Now on Gilenya or Fingolimod, easy seems to be good so far a month in.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


Anonymous
3 years ago

@danrb80 Not unusual to get muscular pain when on Gilenya. I first noticed it when I started waking up feeling like I had been run over by a truck. I started G in ’10 so have been on it about as long as anyone other than those on trial. I am switching to Lemtrada later this month. My MS has been in steady decline while on G. Don’t recommend for a long term solution. Tysabri is much better and the best is Lem. I took Ty for almost 2 years. SEs were bad for me. Most do ok. Just don’t want to be on it for too long b/c of PML. GOOD LUCK!


Anonymous
3 years ago

Dan, I am sorry. I got your 2 posts mixed. Never mind about my G muscular comments. I thought you had those pains upon starting G. If you feel like a truck ran over u, u will know what caused it! 🙂


tabbycat
3 years ago

I’ve been on gylenia for two years, zero side effects, no new leison activity on recent MRI. Some continuing demyelination and weakness, but on the whole pretty damn good. Still work full time. Good luck.


Anonymous
3 years ago

Dan,
I hope you have better results than continued demyelination and weakness in the first 2 years of any DMD that you choose. Unfortunately, I didn’t with Gilenya even though I had MRIs that showed no further MS activity. Gilenya was easier to take and more potent than the earlier injectables. We have a local GP with MS that still sees patients even while in a wheelchair. She is amazing! We are lucky that the latest DMDs are far more effective than what was available for her. There has been a revolution in DMD advancement. Quality of life issues like remaining strong are more important to many than easy oral administration of a less effective DMD. I have an aggressive case. I participated in the BG-12 (Tecfidera) clinical years before it’s release to get a head start on the DMD revolution. It is important to me to be informed about the latest choices so that I don’t waste time and function on less effective DMDs. Everyone is different. Best wishes with your choice!

Post Comment

You must be logged in to reply to this topic.