Rilutek**Do you take it?

[Blubear]

My fathers doctor has not recommended it. He is in the beginning stages of the disease. My dad is on the fence about taking it saying he has not read anything good about it. I know the side effects can be bad, but are YOU taking it, and if so has it helped in your opinion? At what stage of the disease did you start taking it? My dad doesn't think it's worth it for just a few months more at the end of life. Your opinions please!

 

[indigosd]

My husband had severe nausea, light sensitivity, hot flushed face and extreme fatique that did not improve after three weeks of taking the medication so he elected to not continue the medications. It can also elevate your liver enzymes so you need to have blood drawn for liver studies. Web also decided it was not for him. It was three weeks from h---! How are you and your family? Haven't seen you online for awhile. Hugs,
Kay Marie

 

[LauraW]

Mom has been taking it for about a year now. I don't know if it is helping, I don;t think it is hurting. I dont want to stop it to find out.

 

[BethU]

Blubear ... the "few extra months" are a little misleading. That figure was reached because that was the result when the trial ended. The trial did not go on long enough (years, decades) to see just how long the benefits would continue. I am under the impression (but I can't quote sources, so take this for what it's worth) that, in fact, they are finding that Rilutek continues extending life well beyond the few months shown in the clinical trials.

As for me, I tried it immediately after diagnosed, but found that it gave me intense twitching and shaking, so discontinued it.

I would definitely give it a try. Many people have no ill effects whatsoever, and considering what people are trying and spending with Hail Mary unproven treatments, it seems foolish to not at least try the only thing that has been proven to extend life. Also, it prolongs life in the less drastic stages of ALS, rather than the end game, another big plus. I understand that the sooner you start it, the more it helps.

 

[BarryG]

I started on Rilutek a month after I was diagnosed so it will be two years in February. I have had no side effects at all so for me it is a no-brainer, it is at least something that I can actually do. And if it only give me a few months, well a few months is a few months. I don't know if it is helping me but it isn't hurting me so I will stay with it.

 

[Danijela]

Yes, partner been taking it for over year with no side effects what so ever. Beth is correct about the figures. I have read 'the earlier the better' many times so still bewildered by advice not to even try it. Unless, there is 1. Cost issue, 2. Underlying health ( e. g. liver) problem.

 

[peter57]

As soon as was diognosed i was on it, now over 12 months with no side effects.

Is it helping ?
I dont know but I will be staying on it, as Barry said a few months is a few months and who knows what is around the corner.

cheers
Peter

 

[Blubear]

Thanks people! I am having lunch with my dad this coming Thursday, and I really want him on it. I am hoping to print this thread out to show him what people are doing. He follows the "Eric is Winning" book to closely I am afraid. Everyone is different and he is just one person, that's why I want all of your imputs. I know it must be hard to tell if its working for you since you have no way of telling what the progression of the disease is for you personally without taking it. I just wish we could get an overall view of all the long lifers and what they are taking.
Hugs,
Blubear

 

[GlenBrittle]

Yup , started a month after my diagnosed. I waited until I got back from Mexico as I did not want to start new drugs while on vacation.

Side effects ? Yawn Yawn Yawn.

Glen

 

[tajmom]

I've been on it for over a year, no side effects whatsoever. Hoping it is helping!

 

[GlenBrittle]

I've been on it for over a year, no side effects whatsoever. Hoping it is helping!

We are still here !

 

[cara]

My mom started it early on but it made her sick so she stopped. She is going on 18 months since symptoms started and right now is not doing very well. She has had a steady progression. I don't know if it would have slowed it but thought I would mention it so maybe if enough people post a correlation might show up.

 

[Katie C]

Glen's been taking it since August. No visible side effects, but the last blood draw did show raised liver enzymes so they will watch that. Now... "allowable increase" is 5 TIMES the normal level, and Glen's were about 1 1/2 to 2 times normal so the neuro wasn't really alarmed. One heads up... most pharmacies don't exactly keep a lot of the stuff on hand, so if your dad does decide to give it a try... make sure you order refills well in advance.

 

[Al]

I took it for 6 years and recently quit. My stomach is acting up with all the other crap I take. I believe it helps. Earlier the better.

AL.

 

[Big Mike]

It doesn't seem to be hurting me, but I don't think it's helping much at all. There's probably other things on your own that you can try that will do more good.