Experiences with Rilutek

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liz

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I expect I'll be offerred Rilutek when I get to my first ALS Clinic appointment in two weeks. I've read mixed reviews about this med in the official literature. For folks who don't mind sharing, I'd love to hear people's views and experiences (pros/cons) with this medication. Thanks in advance.

Liz
 

TBear

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I believe that the published benefit shows anywhere from two months to two years extension. My wife was on it for 4 years with no side effects damage (ie liver/kidney impacts)... and I have a friend who has been on it since the middle 90's... and is still on it (15 years)!
I think that it's totally random... but someone out there has made the effort to collect the data and do the stats on this... the large question is whether it's worth the cost and whether it's covered by your insurance!
Good Luck!

T.
 

raggedymary

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My mom was told it was $800 per month and that medicare does not cover it. Anyone else with this experience?
 

Al

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I take it and it is $692.00 Canadian a month. I get stomach rumbling and grumbling from it. I think that's what it's from anyway but no liver or kidney issues. There are ways around the cost issue. I assume you are in the States raggedmary? Try doing a search above on Rilutek and I think the link for assistance with paying is not too far back or someone else may remember where it is and repost it. AL.
 

CindyM

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Does anyone know if there is a higher chance for success if you go on it sooner?
 

liz

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To All

I'm most interested right now in the experience of those who have taken the med or declined or taken then stopped it because of reasons other than cost.

Thanks,

Liz
 

Al

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From what I have read the sooner you are on it the better. AL.
 

liz

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You know what, Al...... I'm told the MND specialist in our area stopped prescribing Rilutek because he felt there was little benefit and too many side effects.

When I was in the same room with this guy getting the second opinion which convinced me the ALS diagnosis was real, he never even mentioned Rilutek as an option. He just wanted me to come back to talk to him about clinical trials. I think this guy, although very compassionate, is more of a scientist than a physician.

I don't want to be a subject, I want to be a patient.

Liz
 

Al

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Well I will agree that there is no way to tell if it is doing any good. But then there is no way to tell if it is doing no good either. I figure I may as well take my chances that it will do some good. The second opinion guy might have assumed you were on it and never mentioned it. You have to do what you think is right for you. AL.
 

onion

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Since yesterday, was my guy's diagnosis, I might not know what the heck I'm talking about. But I naturally asked about drugs that might help, cure? And was told of Rilulek.
Our doc said it is a tiny piece of the puzzle, since it's proven to slow progression in many, but not all. And some can't tolerate it. He did offer to prescribe it, but said if it wasn't tolerable not to take it. The benefits don't warrant the pain and discomfort. I guess that means: give it a shot?
 

Al

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I'd take that as a definite maybe. Most people complain of indigestion feeling and gas. There are about a dozen other side effects listed but some people don't get any. Depends on the individual. I had stomach problems before so I'm not sure which is giving me trouble.So I take my chances with the Rilutek. AL.
 

MtPockets

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I've been on Rilutek since May and other than the excess gas running all my friends out of the room occasionally, seems to be no other side effects. My Insurance pays for it or I would not take it as it cost, $1000 a month down here.
I hope everyone enjoyed their Thanksgiving. I spent most of mine in bed. My back and ribs were having bad spasms and I had a migraine.
Doing a lot better today, but sure missed visiting with all the relatives yesterday.

God Bless
Capt. AL
 

liz

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Thanks for the info guys. I too have pre-existing stomach problems, so I'll have to see if I can tolerate it but it sure seems worth a try.

What's the word on Rilutek and alcohol. I'm sure the docs don't recommended it but are there any alarming warnings?

Capt. Al - Sorry you were laid up on turkey day. Maybe you can still get in on some leftovers action.

Liz
 

Al

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Rilutek can be hard on the liver so they usually give you monthly blood tests to see if there is any effect. I wouldn't recommend taking it with alcohol because it is supposed to be taken on an empty stomach but if your liver is OK at the start which mine is I still have my glass of red wine per day for the heart. Some days even more than one. LOL.
 

liz

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That seems reasonable.
 
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