Have you had a good or bad experience with Gilenya / Fingolimod? I'd like to hear it all. Thanks.
I wish I had never started that drug. I'm planning to wean off of it in June after my neice's wedding and I am terrified. Some patients who have discontinued Gilenya have had bad exaccerbations during the washout period. This is fairly new information. If I had known this when my MD first floated the idea of Gilenys by me I would have said no.
My new doctor has discussed frequent blood tests and weekly steroid injections during the wash out period to manage the risk of this happening to me. I am so upset about this. I feel like a pincusion already from frequent blood draws and I don't play nicely with steroids. My advice to anyone considering Gilenya as a treatment is to pick a different drug. There are many others.
Thank you. I appreciate your candor.