Gilenya? I might try it, but would love some input on it

[62Rainey]

I saw my MS doc yesterday.  I really don't know what to do.  I asked point blank...is this for sure MS, or  because you can't see any other reason for  my symptoms you don't know what else to call it.   He says "it's MS, we just can't figure out for sure what kind"   Probably Primary Progressive, since I'm not having documentable flare ups or episodes that come and go.   He said, you can try gilenya, but insurance won't cover it unless you meet the criteria.  He thinks he can word it so it would be approved, but then I have to go through a bunch of testing and do the first dose in the office to make sure my heart won't slow down too much.    

I asked what are the side effects, he said most people say they don't feel anything at all.  Hmmm...ok.  So what will it do for me...."it helps slow down the progression"  of the MS that we are calling MS even though we don't know for sure what it is....  I'm trying to decide if I should try it knowing that I don't know what it will do for me, and I have to go back to work tomorrow and act like all is just great!   I worry as I drive for a living in a mail truck, and am afraid to take anything that could affect me when I'm on the road.   It's scary enough out there in traffic without worrying about side effects.    

I don't know that I want to take this drug.  But....if it would help, I think I should ......decisions decisions decisions.

Any advice info you think would be helpful would be sooo much appreciated!

Thanks again,
Rainey

[sllowe]

Hi Rain,

Here is a link to our Gilenya users who will be more than happy to share their experiences. A friend of mine is wondering if he should go on to it too after 10 years of Rebif. He's doing well, but is considering going oral.

Since it's newly approved, not as many users listed on here yet...
http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412

Hope this helps

[62Rainey]

Thanks Paula,
I have been reading about it, but since it just came up yesterday I haven't had time to do too much.  From what I've read so far, the side effects haven't been too bad, but like I said, I've only started.   The doc hasn't suggested I try any other DMDs as he thinks it's PPMS, but can't say for sure, and there hasn't been any real benefits seen with any of the other drugs.  I know it's silly to hope this, but I guess the Drs really can't do anything to help other than suggest things that I can at least try even though they probably won't help.   I guess it is all up to me, and I'm at a loss right now as to what to do.  I'll figure it out eventually.
Rainey

[figuerpa]

My first thought is to reasearch it. Research the side effects. I was reading about it yesterday at my neuros office because 1 it was there and 2 that was the first med my neuro reccommended when we discussed a DMD. I chose Copazone, he wanted Gilenya but I wanted Copaxone for the less side effects.

It is always a personal decision. I did my research about all the options and made my choice. If it doesn't work for me then I will change but as of now I am sticking with it.

I hope you come to a decsion that you are at ease with.
Paula