relapse on gilenya...getting frustrated

[Moosette]

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**

[Mable]

There's another powerful drug coming out next year called Lemtrada/Compath/alumtuzumab. It sounds like you trade in your thyroid for it, but it has kept people disease free for a very long time after two treatments spaced one year apart. A paper published recently shows it even reverses some disability. It kind of scares the snot out of me, but I'm real curious about it.

[GandalfRA]

I feel the same about gilenya. It felt better on Avonex. I too had a relapse on G.

[sweetness06]

hope you feel better soon

Moosette I am sorry u r going through. I am going through the same thing. I only took G for 9 months and did my MRI and it warranted o call from neuro that nite. I hope things get better for you along with 3 days of steroids. I hope your MRI comes back good.

[unscrambled]

Add me to the list.

Now I have to make a crummy decision in a month when I see my neuro. IV steroids now. Boo.

Gotta say, I had 30 infusions of tysabri with no problems and a silent MRI, no progression. I'm jc+ and I reallllllllly feel like my time on that drug is up, which stinks, because I'd go back on it in a heartbeat if I didn't have jc.

Blech. Good luck to everyone as you try to work out the best of a bunch of crummy choices.

[srachis]

G

I started on Avonex and developed a needle phobia where I would pass out as soon as my husband injected me. I was on that for about 7 months and did great on it.

I started Gilenya and had a relaspe and a bad one. My doctor took me off and I am on Beta now. A much smaller needle and I use the autoinject which has helped with my needle phobia. Glad I went off Gilenya.

It's all about finding out what is best for you! Best of luck!