Rilutek - how long?

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Active member
Dec 29, 2006
Hi Folks - It has been a while since I was here. I have a question for everyone.

Does anyone know of any reports or research which would give an idea of how long Rilutek continues to help? When I started taking it 2 1/2 years ago it was said it only worked for about six months. More recently I saw a report that it might continue to give benificial effects for a year,

Since thanks to the insurance companies I will not be getting it after the 1st of the year, I am wondering if I will really be missing anything.

Any info will be appreciated.

RJG -- JustMe
My clinnic has told me the year as well and they say the earlier you take it the better off you are.
I have been on rilutek for about 3 years maybe more. While I was doing a study drug at the university of miami I got the same information on it's benefits. 1 or 2 years.
If your doctor will assist you, there is a place called the national organization of rare disorders.(NORD) They may pick up the tab on the med. They have been paying for all my rilutek all along and I'm sure they will cover yours also.
Nord ? ? ?

B]Thanks for the answer and the advice.[/B]

Yes, I know about NORD. I was sent the application for the free med program. Even if I were able physically, to make all the copies, tHere is absolutely NO WAY that I am going to send them my TAX Returns, Bank Statements, Pay stubs, Saving and Investment Account statement.

So they can tell me I am not destitute enough to get their help. i have some savings, which can not be replaced now, and are all that stands between us and any disaster that comes along. So if that is the price of their help - - - - - - -?

Sorry to vent but when I saw that info form they sent I went balistic,

JustMe RJG
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