There is a facebook forum for people on Gilenya or those considering it. It's open to the public. Just type in "gilenya support group" on facebook. There are lots of people talking about side effects.

Oh wait, I suppose I can just paste it for you!

http://www.facebook.com/group.php?gi...6888138&v=wall

Read comments on this wall and also make sure you click on the "discussions" tab at the top.

Anyhow, I found it very informative.

Laurie, Nat's link is great...it should answer many of your questions. There's even a discussion of those leaving Tysabri and starting Gilenya.

Just wanted to say thanks i have been reading on the facebook site. Sally i told Gilenya support i wanted answers to some things before i started they told me talk to my Dr. Tryed his nurse says i am his first patient but she will try to get answers fro the drug rep. Lets see when i hear back.

Thanks
laurie f

Hi! I saw your post and thought I should give you some information.

My appt. with my neuro was Nov. 3rd, 2010, and that's when I made the decision to stop Copaxone and switch to Gilenya. I had 4 relapses last year that were treated with steroids each time, so I figured it was time to change DMD's.

I actually started Gilenya on January 6th. That's how long it took to get all the testing completed, the starter pack of meds shipped to my neuro, and get the 6 hour appt.

My neuro monitored my blood pressure and heart rate himself during the six hour trial period. Everything went just fine.

I have had problems with copay assistance and my insurance, though. I've had to make many calls to get them to clear my balance. I was getting pretty frustrated because it was affecting my ability to order other medications. This week, it was finally taken care of.

Having patience with Gilenya support is important. Sometimes the nurse navigators do not return phone messages, so you have to be persistant. Once they assign you to one, if they don't help, ask for someone else to assist you.

I've had few side effects since starting, but none too serious. The first couple of weeks I had a little dizziness, and I was extremely fatigued. I'm still getting over an upper respiratory infection, bronchitis and sinus infection which came out of nowhere.

My neuro said he believes it is from the Gilenya and is keeping a close eye on what is happening. After a few rounds of antibiotics and some other symptom meds, I am feeling much better.

My latest bloodwork showed extremely low lymphocyte counts. Gilenya is supposed to do this. My neuro was not concerned at the levels and I just received my second shipment.

I really hope things hold steady for awhile because I do not want to go back to doing the injections.

Is there anything specific you want to know?

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 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.. 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.