I am nervous about starting this drug because its so new.

I have been trying to read peoples experiences but have not found much. Can anyone here share their experiences. The proccess of starting and any side effects if any you mighy have experienced. The Gilenya nurses wont talk to you until u r enrolled and i cant do that till may. I have to b off the tysabri for 3 months. I guess its to soon to know if you all feel it is working for you. .

Thanks
laurie f

I am not on it but waiting for answers from those who are.

Good luck Laura..

When I went to my neuro last month and we talked about it, he said that he would have to refer me the ms clinic at northwestern if I was interested in it. The first pill has to be administered under a DR.'s supervision. That scares the daylights out of me. I am taking the wait and see approach. I am curious about other people's experience with it.

I am curious too. My neuro told me when i had an appointment in November that he wanted me to consider it. I see him again in June. I am hesitant to try it at this point since I have experienced so many problems with meds and treatments.

I am hoping the process is quick. I got my eys checed and am getting the EKG Thurs then will get blood end of April and hopefully start the end of May.

I heard in just 5 short months over 10,000 people are on this drug and i can't get people to share their experiences and Gillenya support wont talk to you until you are enrolled but since i was on Ty i cant go straight on Gilenya.

Sorry but i am frustrated becuse i have questions i wanted answered before i started the drug and cant get answered or people to share their experiences.

laurie f

Laurie, just tell them you refuse to start until you get answers. It's your body and you are not their ginea pig.

Actually after reading up on it, I wouldn't touch it with a 10 ft pole, due to adverse side effects. But, I wouldn't do TYsabri past 2 yrs either, because of the dangers of PML.

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.

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