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.

Sorry Gilenya doesn't seem to be working
 

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.

Awwwww, Jalee, I am so sorry for your pain. Looks like the big G was doing you more harm than good.

I'm glad you're off of it and I hope and pray you heal soon..:hug: When you're all better, try some LDN.:)

I was on Gilenya for 167 days. My MS was better, so I'm not happy that I've had this issue and had to stop.

Well, thats one G spot I wont be searching for. I have heard from several about massive headaches, and nausea on it.

Im sorry it didnt work for you. I had my fingers crossed and everything! :(

I just start gilenya on Tuesday this week, and after 3 doses, I was having burning eyes, hip/leg pain, nausea, and this horrible feeling of shaking/tremors, like I was on speed.

My neuro told me not to take it Friday or Saturday and restart it on Sunday.

Well, I felt better on Friday and Saturday, and just took my dose 2 hours ago, and I again am having the leg pain, burning eyes, and nausea.

I want to give this long enough to work, but at the same time, I don't want to continue if I am having an allergic reaction....oh how to know with such a new med!!

You have to ask yourself...is it worth it, whether it helps you a little or not??

I said no to Avonex, even though it seemed to be helping me, because of the side effects, because For me, the quality of life is the more important thing.

Love and good wishes...:hug:

I just heard from my Neuro, and they concluded that the chest tightness/squeezing/pounding feeling, red flushed face, burning eyes, dizziness and the feeling of shaking/tremors/apprehension is an allergic reaction to the Gilenya.
I was told to stop the Gilenya. I see my Neuro on thursday!

how scary! It would have been nice if they told you that before hand so that when it happened you could ID it, instead of being left in the wind to guess.

Im glad you will be feeling much better soon. :hug:

Out of curiosity, what kind of medical tests do you have to have before you start Gilenya, and what maintenance tests are done when you are on it - eg bloodwork and MRIs (and how often do you have them).

At this stage, from what I have been reading, even though I am coming up to three years on Ty, I don't think I like the sound of the side effect profile of the oral meds. With my timeframes, I am expecting my Neuro to suggest them to me.

Thanks for any info

Lyn