so, I have been on Gilenya for almost a year now and was having no real complaints with the exception of an occasional sore throat/dry mouth/cough and some fatigue and headaches that were no longer an issue since I switched to taking my pill before bed..as of a few days ago I began noticing a change in my vision which progressed to full on double vision, also dealing with major balance issues/ vertigo..so, I get to go on 3 days of steroids and just have to hope that this goes away soon.....
I understand that no drug is going to keep a person from possibly having a flare up over time, I guess my frustration lies in the fact that I tried Betaseron and it did nothing but make me seriously depressed, then I went off the drugs entirely for a few months and felt fantastic..then I went on Gilenya hoping that it would be the "magic pill" people had been saying it was despite the negative possible side effects it carries..and I feel alright on Gilenya, some issues I was having before seemed to be getting better (cog fog, sex drive) but I guess my expectations were unrealistically high as far as how G was going to make me feel overall...
I have an MRI in a few days and with the flare up I am not expecting the most positive feedback..I am honestly considering going off Gilenya entirely and maybe waiting for BG-12 to come out..its been almost a year on G so it has had enough time to start "working" according to my dr. Sorry for being so negative but I am just hoping that at some point I will find a drug that works for me...I am JC positive so my Dr. does not want to put me on Ty.....I hate this disease and its unpredictability...I have been trying to stay positive with all of this but this latest flare up is making it a little difficult
**post edited by Moderator to break into paragraphs for easier reading! many people with MS have visual difficulties that prevent them from reading large blocks of print**
I understand that no drug is going to keep a person from possibly having a flare up over time, I guess my frustration lies in the fact that I tried Betaseron and it did nothing but make me seriously depressed, then I went off the drugs entirely for a few months and felt fantastic..then I went on Gilenya hoping that it would be the "magic pill" people had been saying it was despite the negative possible side effects it carries..and I feel alright on Gilenya, some issues I was having before seemed to be getting better (cog fog, sex drive) but I guess my expectations were unrealistically high as far as how G was going to make me feel overall...
I have an MRI in a few days and with the flare up I am not expecting the most positive feedback..I am honestly considering going off Gilenya entirely and maybe waiting for BG-12 to come out..its been almost a year on G so it has had enough time to start "working" according to my dr. Sorry for being so negative but I am just hoping that at some point I will find a drug that works for me...I am JC positive so my Dr. does not want to put me on Ty.....I hate this disease and its unpredictability...I have been trying to stay positive with all of this but this latest flare up is making it a little difficult
**post edited by Moderator to break into paragraphs for easier reading! many people with MS have visual difficulties that prevent them from reading large blocks of print**
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