riluzole

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Mediasmart

Distinguished member
Joined
Nov 4, 2013
Messages
391
Reason
PALS
Diagnosis
08/2013
Country
US
State
NY
City
Orient
Gave in and now on the pill. It is like admitting the worst. No issues so far. Egad.
 
Welcome to the "SONS of RILUSOL":)
 
I know what you mean. When I took my first pill it felt like I was crossing some kind of line even though I was anxious to start as soon as possible because I think earlier the better. Hope it helps all of us.
 
>Gave in and now on the pill.

well, Harold, at least you won't get pregnant :)
 
When you get the prescription it gets awfully real.
 
sure would be easier if it actually worked
 
I'm starting it tomorrow.
 
do any of you above pay for riluzole or is it covered by insurance or VA....I have never taken it...VA would provide but I decided not to stick VA for just a little life extension, maybe....
 
Jerry, it's a long shot but...
 
My insurance pays most of it. I think I would pay for it if I had to, at least now early in the course. I am hoping to gain more functional time.
 
Our insurance pays almost all of it. It has mostly stabilized my husband. At least that is the only thing we can come up with that has slowed down his progression. He lost 12 percentage points in April and May on his fvc but once he started the riluzole 5/24ish, he has only lost 1-2pts. His breathing is a big issue.
 
Pearshoot how do you know it's "just a little"?
You may be the outlier that gets helped a lot!
Read the sticky again. 3 months added to a 3 year "sentence" is nothing to dismiss.
 
3 months added to a 3 year "sentence" is nothing to dismiss.

Depends on which 3 months are added. I'm not sure in my own mind that a 50:50 split between the "OK" period and the "stinker" period is a good trade.

My Docs suggest that since my first onset was probably PMA that developed in to ALS that we lucky 7% get a little bit of a bonus from the drug. We shall see but, and not to make light of a few extra months, but how will we know?

We are, after all, control groups of 1.
 
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