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14117157 tn?1452054966

DMD - Gilenya (Fingolimod)

Hi everyone,

I am going to start the second round of DMD's in a month (tried Tecfidera but could not handle the side effects), i was wondering if anyone is on Gilenya? If you are can you please tell me if you feel different, aka more energy?

I ask as I was only diagnosed last year and my last MRI shows at least two sets of lesions between May 15 and January 16. I have only had the one 'attack' but I have noticed considerable loss of energy. If I think about it my energy has probably been going down for two years but now that I know there is something that I can put it to I am no longer writing it off as not enough sleep or lack of caffeine!!

I may also be slightly hyper-vigilant but it honestly doesn't feel like I am just tired, it feels like something bigger, and I have had my first bout of real fatigue and that was awful!!

Anyway I will stop now (I could write a novel if I let myself :))
Thanks for reading, I hope everyone is feeling well.
Jane
3 Responses
5112396 tn?1378017983
If you are experiencing profound fatigue, ask your doctor about symptomatic medications. DMDs themselves do not treat symptoms. Their job is to reduce the frequency of relapses.

Here is our community thread on Gilenya users: http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412
14117157 tn?1452054966
Thanks for your comments and the link, I'll check it out :)
Avatar universal
Hi Janey,

I don't know much about Gilenya. I know of one person taking it and she has been on it almost 2 years I think without any issues.

Good luck,

Corrie
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