I have been on gilenya since July 9/13 the longer I am on this medication the worse I am feeling, I know I have been told it is not supposed to make you feel bad, but I know how I am feeling, is anyone else having trouble with this medication or is it "just me"
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Sorry to hear you aren't feeling well.
Just wondering, have you had bloodwork done since you've started Gilenya? It can lower your wbc counts. If that's the case, you may need a different dosing schedule (i.e. every other day) or stop the medication for a few weeks, allowing your wbc counts to go back up.
I felt fine, but my wbc counts dropped significantly while I was on it. I ended up with some serious infections as a result.
Hope you start to feel better soon!
Take care,Kimba
“When you change the way you look at things, the things you look at change.” ― Max Planck -
A side effect mentioned is fatigue- is that what you mean?Comment
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yes fatigue is a problem as well as my eyes are worse just feel not inside my body strange or should I say difficult to describe, just do not feel myself, Had blood work done today. see an eye doctor next week am considering stoping this medication for awhile. but concerned about how I go about restarting would I have to go back to a first dose clinicComment
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If you go off for 14 days, you have to restart with an observed "first" dosage. Have you had the first check of your eyes since the baseline examination? I´ve got mild hair loss and low WBC- monthly check. G did more for me than Copaxone in regards to slowing brain lesions in their tracks. Did have 4-6 weeks of dizzy- went away. Are you doing anything dietary, getting enough sleep?Comment
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I go for my first eye exam Monday, I do not eat a lot have no appitiete, yes I have some dizziness, think I am going to try taking every other day to see if this makes a difference, I was so much happier on the copaxone wish it had not stopped workingComment
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Take heart Julie, some of the side effects recede as your body adjusts. At least, that was what happened for me on Avonex. I am due to start Gilenya soon and can't speak as to its side effects but I am hoping for the best based on how Avonex became more bearable.
As for staying on Gilenya long term...I hope it works out for you, but if you fail that therapy, is Tysabri an option?Comment
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