I've been on Gilenya for the past 12 weeks. For me it's no different than taking my vitamins, but some people have said they have some side effects with taking it. I've noticed that this site doesn't have very many Gilenya users on it. If you want to browse through a multitude of peoples experiences with it head over to msworld.org. They have a forum that's just for Gilenya and has a lot of people's (including my own) experiences, questions, etc.

Here's a link to the prescribing information that has a list of all the side effects and also all of the different stuff that happened in clinical trials: http://www.pharma.us.novartis.com/product/pi/pdf/gilenya.pdf

I'm gonna guess that you'll have blood drawn, an eye exam and an EKG/ECG. All of this is standard run of the mill. The blood will check to make sure you've had chicken pox and get a base line for your liver enzyme levels and white count. The eye exam gets a base line for later on when they'll reevaluate for macular edema and the EKG/ECG is just to check you out for the risk of bradycardia and also to get a baseline.

I absolutely love the Gilenya. I did have elevated liver enzyme levels, but the issue resolved on its own. The one thing that I wasn't really quite aware of before starting was that you're going to have to get blood drawn periodically after you start gilenya to check your white count, liver enzymes, etc.

Message me if you have any questions or want to talk.

Hope your testing goes well. Keep us posted!

Wow! Lucky you to even be given the chance to try it. My neuro says it's "too new" and they want to watch it for a couple of years before letting me try it.

Hi there, I've been on Gilenya for 21 Days! Please check out my Gilenya and MS blog at

http://MultipleMiss.Wordpress.com

My Neuro mentioned this med at today's appointment.... But staying on Tysabri for now. After my next MRI I MIGHT have go make a switch to this new medicine.

It sounds expensive!

I wanted to try this my Neuro says it's too new also :(

Sounds like you all need to find a new NURO? most nuro's ive had to deal with are the biggest jerks, OVER PAID AND UNDER WORKED, ship us in, ship us out.............but my NURO now, is the greatest, it's our bodies, and our lives. find a new nuro..................... ive been taking it now for 2 weeks, and ive had no side effects, and no problems......

Hello, I'm new to this group... my neuro also wants me to start taking it. I'm in the testing phase, just as mailman33 was when he first started the discussion. And p.s., the neuro I go to is also the greatest!

I forgot to add... I'm glad to read that for those of you who are taking it have positive feedback about it.

Last night I finished my first Gilenya pack - that means i've taken it for 28 days! So far it's wonderful.. You get to take a pill every night instead of a shot.. and for me.. no side effects. I had an upset stomach for the first 2 weeks (nothing serious), but it's all back to normal now and I don't notice any side effects.

Of course, it's too soon to know whether or not it's helping with the MS.. But i'm hopeful that this is "the one" for me - I had no luck with Betaseron, Copaxone or Tysabri.

PS - As far as the cost.. My insurance listed it as "uncovered".. My neuro submitted a letter saying I tried the other drugs and they did not work and it was this or nothing and asked them to consider it for me.. They approved it on a "special case" basis with only a $50 per month copay!

I am almost done with my third pack of gilenya, and so far, I have not recieved a Bill of any kind, I am sure I will, but I was told I quilified for financail aid, and all, I would have to pay is $350 copay A YEAR.

hi i have been on it for maybe 6-7 weeks- doing fine! makes me a little sick at stomach so i take it at night! and -no more shots!!!
im bruised from them things!! i got financial aid- and have ins. so i dont think il have to pay much- if anything- let us know how you do!
hugs!! tickey

I have been on Gilenya for over a month and it is amazing.
The nasty side effects I had with Avonex are gone, I feel like I can have a "normal" life.
I am very happy with this new medicine, and I hate shots so this is perfect for me.
I also notice that my bladder issues have been fixed by about 30%.

Hello
Because I have tested positive for the jvc I will be swiching from Tysabri to Gilenya just had last infuson of Tysab see my neuro in Dec and if all goes well I will switch, it will be so good to just take a pill..
bye for now

I was on Copaxone for five years and due to an increase in relapses and lesions my Dr. switched me to Gilenya. I was thrilled, no more injections. After a month and a half I got deathly ill. Vomiting, lose bowels, severe fatigue just to name a few symptoms. After an ER visit I contacted the Gilenya support line. The nurse said, "Side effects can show up after taking the drug for as long as I had." She suggested I cointact my prescribing doctor.

My Dr. took me off of the drug for one week in which time I began to recoup. I resumed taking it and after three days I experienced the same adverse effects. I was taken off of it and was put back on Copaxone. I am patiently waiting for the next FDA approved oral medication.

I have been taking Gylena for almost 6 months. The only thing that I can tell that it has done for me is make me more tired than I was.

Through blood work that I have done every month, I do know that it has done what it is supposed to do to my white blood cell count. So, theoretically it is working. In acuality, do any of us know what is working really? At close to $4000 a month, I hope it does everything that is promised!