Rilutek

[mikeb1]

When my Neuro asked me about taking rilutek I said no I don't like taking thing that make me feel bad. everything was new to me and i wasn't sure what to do he said that i have a little time to change my mind and he said that it would be better to be on it but it was my disission.Well I need a little help from you guys. yes or no? what is the side effects and how does it make you feel? test studies all bull you at the forum have the real answers.
mike b

 

[momap53]

I took Rilutek for about 7 weeks. My liver enzymes became elevated. Doc took me off, said "You can live with ALS, you can't live without your liver." They're WNL now. I've had to give up the rare adult beverage as well just to be on the safe side.
You know what we always say: everyone is different.
You can always try it and if it doesn't agree with you come off of it.

 

[rcharlton]

I've been on rilutek for 6 years with no side effects.

If your insurance will pay for it you should test it out.

 

[hn7609]

I took it for just a couple of weeks. Can't really say it had any side effects that I noticed besides a funny taste in my mouth. I know that this is stupid but the part that I didn't like about it was having to take it on an empty stomach. When I got up in the morning I could either have my medicine or my breakfast not both. Also when I changed to a different clinic they said that most of their patients don't take it but it was my choice to take it or not. I decided not to take it..........My understanding is that it will only prolong life by a few months and that it may slow down the progression, but nobody is really sure. Unless they can give me a medicine that really does something I'd just as soon get this over with.

 

[minnesota]

Hello,

My husband took it for 3 weeks after giving it a lot of thought, but felt more tired. Just our input you see what you think is best for you.

 

[ReneeM]

Same here... My husband took it for a while then quit when all it did was make him very tired. He didn't want to "sleep" through the rest of his life. He no longer takes it.

 

[Ronc75]

I'be been taking this drug fo r four months . The only significant side effect has been fatigue. Sometimes staying in bed all day seems an attractive option.

 

[rcharlton]

I don't have any research to back this up, but I expect that the often quoted 3 months increased life expectancy provided by rilutek is based on the average PALs life expectancy of 2-3 years.

For fast progressors, the benefit is probably significantly less or negligible.

For slow progressors, the benefit may be significantly more. One neurologist I spoke with said possibly in the order of a year or more.

There is no question that rilutek has some benefit - the extent of that benefit is still unclear.

If your drug plan will cover the cost - IMHO it is a no-brainer - try it.

If you don't have a drug plan or you start experiencing undesirable side effects- you may want to reconsider.

 

[Felica]

I agree with my husband. When I said it made me feel more tired. He looked into it and said. 1 they don't know how it works 2 it will not reverse symptoms. 3 it will damange you liver. 4 prolong life just three months. If my wife don't want it. I am not going to give it to her. Not worth it. We paid $1200.00 for it. I took it one week. Not worth it now creatine he makes me take everyday. Athletes use it. Worth it. Lol

 

[llwlpn]

I have been taking it since July with no side effects. My insurance covers it so I figured why not. My liver enzymes have been fine.

 

[Al]

I've been taking it on and off for 8 years and think it helps but that's just an educated guess.

AL.

 

[TedH5]

I have been on it for about 18 months and have had no noticeable side effects. Everyone is different and you have no way of knowing if it is helping but I would rather take my chances with it as long as you can tolerate and potential side effects you may have.

 

[Whitsend]

I've been on it for almost 3 years. No side effects, not even fatigue. They check my liver every 3 months. If there's a problem they'll take me off it. I have insurance. If I didn't, I could never afford it.

 

[Will]

For limb onset, slow progressing ALS, I think is is wise to take the drug. My PALS has no side effects, and his progression is slow. Starting early may be the key.

 

[glupavomomiche]

I agree with Will. I think the sooner you get on it and stay on it, the more benefit there will be. There have been some studies overseas that indicate exactly that, especially in younger folks. The company that makes Rilutek also offers a program to save $100 a month off the out-of-pocket cost if you qualify. I wish I had known about it when I first starting, but definitely taking advantage of it now! As for side effects, I could hardly stay awake when I first started it, and I had absolutely no appetite. But once I got used to it, I can stay awake just fine (in fact have a hard time sleeping at night, but could be because I had to cut out the Tylenol PM because of the liver/paracetamol thing) and I can't tell if I'm tired from the medicine or simply trying to make it through a long day at work!