Quote:
Originally Posted by Jalee
Even though I haven't posted in awhile, I thought I would share my latest experience.
I have officially been off of Gilenya for two weeks. I have had non-stop 24 hour a day head pain since April 1st. 3 MRI's have shown extensive meningeal
enhancement. I've been in the hospital twice, and have had lots of tests including 2 lumbar punctures.
My neuro believes it is because of the Gilenya and is considered an adverse event which needed to be reported. I'm hoping the inflammation in the brain gets better instead of worse. The only treatment right now is pain meds until my low WBC count increases.
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Sorry Gilenya is not working to your advantage. I'm doing a study with Gilenya and I'll most likely not go back to the injections when the study is over providing my ins. covers it. I had headaches the first few days but other than that, nothing. I get bloodwork done on 7/11 and hopefully it will be fine. I've been on it for about 2 weeks, so we'll see.
I hope another oral comes on the market soon.