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  • kimnmss
    Have you had a good or bad experience with Gilenya / Fingolimod?  I'd like to hear it all.  Thanks.
  • waltzing_matilda

    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.

  • kimnmss
    Thank you. I appreciate your candor.