I am surprised no one here has been in the trial.

It's a little weird. . . I saw somewhere in cyberspace it definitely was on at least last year in the US. . .I had said no bec I supposed it was something that had already been tried and rejected for progressive and that maybe it was a chemo type one. I just discovered it was a pill last week. . .like I said, it wasn't explained to me. . .And I had no idea is was/is relatively new.

Gilenya is for RRMS. I am currently in a trial by the same maker ( Novartis ) for a drud for SPMS! I was the second person approved! A lot of tests are required first. My first dose is next Wednesday, August 14, 2013. I will let you know how it progresses.

Keep us posted!

Hurray! Jumped through all of the hurdles and I am in the trial for this drug! I spoke to a nurse and she indicated that if any one in any city was interested she could do a phone interview and find a site near to where you live! The only BIG condition is that you have to be ambulatory! I use a walker and they let me bring a wheelchair to the clinic to save energy! Any one that is interested email me at marilyn4342@hotmail.com

Great!

Well, it has been 3 1/2 months and I don't feel worse, nor do I feel a lot better (yet)! I walked up the stairs last week, slowly but surely! This might not mean anything to some, but before now, I had to pull myself up the stairs via the railing with two hands. I have also been able to go places and stay out longer than 3:00 p.m.

So....

Great! That means A LOT in my book! I, on the other hand, am having a harder time getting up the stairs. I haul up my left leg with a belt. We are actively looking for a ground floor or elevator equipped apartment building. If only a trial like yours were happening where I live!

I have already recommended another man on this forum for this trial. My Nurse said if any one was interested to forward to her their name and number, and state they live in and she will try to locate a place for them to go to get involved.

If interested let me know!

Well it is November and I still feel okay! I had my pulmonary check up and an eye check up this week and everything was good. Physical on the 12th of November. We shall see!

Are you noticing any improvements in things? If so, in what?

I myself, have not found an apartment that works for us yet, so have adapted again, and I have replaced the belt to haul my left leg up with flipping my cane upside down, and putting the handle under my heel to help my foot up. I have also been driving to my new job with my new (to us) car, which has worked out very well. It is an automatic, hard to get in this part of the world. (Unfortunately EVERYTHING is automatic-windows, doors, locks, windshield wipers, secondary lights, beeps when you park, even has a button which calls emergency services, which I discovered by accidentally putting my bag on it!)

I am not expected to see improvements on this study. It is to keep you where you are and keep you from getting any worse.