This thread just showed up in my daily google alert email for the topic of Gilenya and I just thought I would pop in to say that I have been on Gilenya since the TRANSFORMS trial. Saturday will be my 4th anniversary.

I can't tell you what tests are performed prior to getting on G now that it has been approved but during the trials we had yearly dermatology exams, eye exams every 3 or 6 months, blood work every 3 months, an annual MRI, and a pulmonary function test every 3 or 6 months. We also had an EKG and I think you will be tested for your antibodies to Chiken Pox.

The side effects I experienced were mild and disappeared after 5-6 months. They included:

1. Drop in heart rate of 14 bpm upon first dose which recovered after 6 hours.
2. Increase in upper respiratory infections (I was sick with a head cold at least 1ce a month for the first 6 months).
3. Increase in urinary tract infections (I had one of those just about every month the first 6 months as well.)
4. I had 1 blood test come back with elevated liver enzymes out of all 4 years worth of tests. It came on the heels of a weekend I spent helping a friend prepare Jello shooters for a party and I sampled a couple. I"m not normally a drinker. I didn't do it again and my blood work returned to normal.

As far as results, I have gone from walking with 2 canes at the start of the trial and relapsing every 3 months to no longer needing a cane, being able to run short distances, and I have not had a relapse since April '07.

It was the best decision I'd ever made for my own personal MS. Everyone's results may vary, and it may or may not work out for you, but I thought I would share my results.

I am a member of the Facebook Gilenya Support Group and try to participate on a daily basis. We encourage anyone interesting in taking it and those already on it to join us there.

For answers about side effects and risks vs benefits however, no internet forum or group will take the place of talking to your doctor or seeking answers directly from Novartis.

Hope that helps.

Hi Laurie,
My name is Laura
and I', leaving in Italy I also have MS and I'm trying to fight tooo bad when you are 27!!!!
Anyways I'm in this forum cuz U really want to stay in tuch with rhe other side of the country also to have news on the new tratements.
I was under tysabri for about 2 years and a little more!
Now doctors found that I'm positive at JC virus so they want me to stop it and I feel sooooo bad inside because on one hand I gelt sssso goood with Tysabri but on wandsday i'LL HAVE mY LAST infusion and I really don't know what to do then.
Doctors say that it is my decision but the things are Continue with a PML risk, stop it and doing avonex even if I don't like it and I think it makes me feel wroste or try to start with the new Gilenya.
So is there anyone who allready started and who can give us information about it!?
Thanks a lot

Laura

I've been on this medication for over 61/2 yrs. I have been on every dose study that Gilenya has done. When I was diagnosed in 2007, the whole left side of my body was paralyzed. In the course of 61/2 yrs, I have learned how to suppress this disease. I have chased it from the top of my spine to the tips of my toes.

I have learned what turns it on and how to turn off an attack in my body. Doctors cannot explain how I turn it off because they don't understand my findings. I cannot be a spokesperson for Gilenya because I discovered something the doctors cannot explain. I explain to the doctors that the attacks start in your mind and that it is caused by stress.

Suggestion: Document everything that happens to your body. Note what is going on in your mind prior to the onset of an attack. How much stress are you experiencing at the time of your MS attack. Note the tone of voice that people are using when speaking to you. Is it calm or harsh? Try to pinpoint the location of the where attack of numbness starts in the spine.

I would like to thank Novartis for allowing me to be a test patient. My goal is to be on this medication for the rest of my life, and share what I have learned with everyone. Please ask Novartis to allow me to share what I have learned about how to suppress the MS attacks with the world.
P.S. I won the battle against MS.

Starting Gilenya soon if my tests are ok. I have to have a test for macular edema first, then an EKG, as well as another EKG six hours after the first dose administered by a nurse in my home. Wish me luck!

My doctor suggested I switch to a stronger med since I'm having some progression on Copaxone now.

The best of luck & love to you Wiz..

Hi Wiz!

I answered you on the "other" board, too. But you probably didn't recognize my new user name, BoyzMom.

Anyway, I started Gilenya almost a year ago. I had been on Rebif, Tysabri (60+ infusions), Copaxone, IVIG.

I feel almost as well on Gilenya as I did on Tysabri, and that is saying a lot.

I had a few side effects to start - a slight nagging headache for a few weeks. And I was absolutely exhausted by 10 a.m. I switched to taking it in the evening, and now I don't fall asleep in my coffee!

Now, other than a great MRI in October, I have no side effects at all. Eyes are good. Liver function is good. Heart is good.

I'm jealous that you get to take your First Dose Observation at home! How did you manage that? I spent 6+ long and boring hours in a cardiologist's office!

Good luck to you!

That's good to hear Karen!

When I said I would try Gilenya, my neuro's nurse said the drug company would send an RN to my house to set me up. I'll need to vacuum up the cat hair beforehand I suppose.

My symptoms are really getting worse so I hope it either stops them where they're at or makes me feel better. I feel like I'm 80 years old lately!

Thanks for sharing though, it gives me hope!

I'd urge you to join the FB group "Gilenya (Fingolimold) Users Support Group". It's closed so no one on your friends list can see what you post. I'm a member of that group, as well as one for Tysabri (which I take) and Lemtrada... seeing as I'm JCV+ I know I won't be on Ty for much longer than two years, I like to read about the other DMDs. Great support in those groups!

Thanks MS Belle,

I joined the group. I should be starting Gilenya in early March. I'm hoping it will keep me going. The new 40 mg Copaxone does not seem to be doing the job and the shots are getting old too.