My disaster with Gilenya

[frickel]

My neurologist, who I adored, was one of the beta sites for Gilenya before I moved and became her patient. I had previously been on Avonex and hated the side effects. She thought and I agreed that Gilenya would be a good drug to try. Things seemed fine, except I became less and less focused, unable to get any work done, scattered. I was planning to tell my neurologist when she returned from vacation that I wanted to stop the med, but before that happened, I had three grand mal seizures and a stroke. I was unconscious for 12 days with some sort of wild blood pressure problem, and woke up without the ability to balance a checkbook or read a map, AND with diabetes, thanks to a ruined pancreas. Fortunately, most of my other skills and organs remain intact, except for what MS had already taken (which I won't bore you with). My neurologist really, really didn't want Gilenya to be the cause of the seizures and the stroke, and she worked very hard to find another cause (she joked about all the paperwork) but I don't think she ever found anything else to blame it on.

[Kimba22]

My neurologist, who I adored, was one of the beta sites for Gilenya before I moved and became her patient. I had previously been on Avonex and hated the side effects. She thought and I agreed that Gilenya would be a good drug to try. Things seemed fine, except I became less and less focused, unable to get any work done, scattered. I was planning to tell my neurologist when she returned from vacation that I wanted to stop the med, but before that happened, I had three grand mal seizures and a stroke. I was unconscious for 12 days with some sort of wild blood pressure problem, and woke up without the ability to balance a checkbook or read a map, AND with diabetes, thanks to a ruined pancreas. Fortunately, most of my other skills and organs remain intact, except for what MS had already taken (which I won't bore you with). My neurologist really, really didn't want Gilenya to be the cause of the seizures and the stroke, and she worked very hard to find another cause (she joked about all the paperwork) but I don't think she ever found anything else to blame it on.

Oh, gosh, how awful! I'm so sorry to hear that all happened to you

I hope all things considered, you are doing better now.

And welcome to MSWorld!

[BadAttitude]

Holy cow, Frickel, so sorry to hear of your reaction. I was on Tysabri for six years or so, then had to go off of it because of high JCL virus levels. My neuro, who I also trust and respect, prescribed Gilenya to tide me over until the FDA approved Lemtrada was approved.

In the course of the year that I was on it, I had two vicious relapses, the second worse than the first. New symptoms emerged in those relapses, and I have yet to recuperate from them fully. Speech issues, swallowing dysphagia, cognitive deficits, sense of balance screwed up, optical crap that messes with me...lost my job, my band, and my house (I had just moved into a new rental and couldn't make the payments).

Since then I've been on unemployment and trying to rebuild myself back up but it's been slow going and discouraging, a little, but it could be worse. Obviously. On the bright side I did get my first Lemtrada infusion when it was approved, and I have been slowly clawing my way back into functionality. I don't know how you feel, but I can understand that you might be feeling depressed. I wish I could help you.

[hope32]

Wow. I am so very sorry that happened to you.