Riluzole (Rilutek) in ALS treatment

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yawz

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Hi,

My mother got recently diagnosed with ALS. Her doctor prescribed Riluzole (Rilutek). Is there any other newer/better medicine for ALS?

Thank you.
 

mrvaughan

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No. The Rilutek has been around a long time and there really is no "medicine" for ALS. I do know that even though my husband has ALS, his progression was slow. One of the things that he did was take a lot of the basic supplements B2, Fish oil, coq 10, vitamin e, and read about anti oxidants. I don't know if they worked, but he was basically healthy and the rate was slow.
Good luck to you. Do not believe that rilutek is a cure or a miracle. Read about it yourself, but it really only seems to extend life by a short bit.
Mary
 

FSHolbrook

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Mary basically said it all. It slows do the nasty disease but, not much. The only down side I can see is you need to get a liver function test every 3 months.

Rick
 

yawz

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Thank you all for taking the time to respond.
 

GregK

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Read about [Rilutek] yourself, but it really only seems to extend life by a short bit.

As my "2nd opinion" neurologist explained, on average Rilutek extends life for "a few months".

But in any population there are people both above and below the 'average'.

So he said that it is possible that Rilutek will do next to nothing but it is also possible that it will extend life for many, many months.

And there's no way to tell which way things will go unless, of course, you don't even try!
 

Mediasmart

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My neuro at Lou Gehrig advised the Rilutek was up to me but it was a 2-6 week possible prolongation and although I might have a week or two "up to the tipping point", having my life extended for a week or two during the grim period was something I might want to think about.

I admired him for being so straight up with me. Good doc.
 

adozi

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I saw a presentation by the head of the u of KY ALS clinic that i think said it could extend by a few months. Plus, there have been a few advancements since riluzole was developed 20 years ago. I personally take it.
 

Nancykc

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I guess the question I have is...which three months? When do take it?
 

affected

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@Nancy

welcome to the forum Nancy, sorry to see your diagnosis, but you will find this is the best place to be now.

Rilotek has to be taken early in the disease and you need to still have good breathing.

My PALS tried it, but he had side effects he didn't like, and as it happens he seemed to be progressing fast for the 3 weeks he was on it. I don't think it had anything to do with the Rilutek as he has continued being rapid progression.

It certainly does seem to give some help to some people, but it is hard on the liver so you need to be monitored.

Talk to your neuro about it so you can then make a really informed decision.
 

Nancykc

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Thanks for your reply.
I've discussed with my neuro. He isn't advocating one way or the other. I've decided to try it.
So in terms of the liver, do you think it would hurt to have a cocktail or wine while I'm on it? Haha.
I hope you and your husband are managing. Vest wishes, nancy
Best
 

Nancykc

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I will be starting riluzole in the next few days.
I'm not terribly advanced in my illness and understand that if the side effects become problematic, I can always just discontinue use.
Anyone out there taking it or have feedback?
Thanks,
Nancy
 

Mediasmart

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@nancy

let us (me) know how it goes. I'm fairly early on although have had a bad few weeks, and am back with my clinic in a couple weeks...
 

azgirl

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I started having symptoms last July and was diagnosed officially December 9th. I started taking Riluzole the end of December.

My doctor explained to me that although it may extend life only a few months, she believes those months are spread out over the course of the disease and it can improve the quality of life during that time. This is the reason I decided to take it.

So far, I have not lost any additional function over the past two months. My weakness is all on the left side, hand and leg, but I can still walk a couple of miles and swim daily. Everything is just done a little slower these days. It's impossible to tell if it's because of the Riluzole, or if I've just been fortunate so far.

It is a bit of a hassle to take the doses at the right time, allowing for 3 hours around taking it with no food. I have not noticed any side effects from taking it, but I'm really careful to follow the instructions. I do allow myself a glass (or two) of red wine each evening, and have slight concerns about the possible liver damage that could result, but I guess that's a risk I'm willing to take right now.
 

John1

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There seems to be a lot of misinformation and downright ignorance surrounding Rilutek. Neurologists are among the offenders. Conventional and retrospective studies have shown that Rilutek definitely slows progression and extends lifespans for PALS. The three month figure is likely conservative and is based on a three year longevity. If a PALS is a slow progressor, the benefit will be proportionately longer.

I have been taking Rilutek for nearly 13 years with no side effects. I have my liver enzymes checked about every 4-5 months. Never any sign of elevation in them for me.

In a retrospective study of more than 800 ALS patients over a 10 year period, it was found that 38% of PALS taking Rilutek were alive after 5 years whereas only 12% of those not taking were still alive:

http://pn.bmj.com/content/3/3/160.full.pdf

Here's what the ALS Association says:

The ALS Association

The European Union made a study of its effectiveness and found that patients who took it for 18 months lived 2 months longer than those who did not. This would extrapolate to 4 months longer survival for those taking it for three years. Here the link:

http://www.ema.europa.eu/docs/en_GB...y_for_the_public/human/000109/WC500056578.pdf

Based on the research, my advice is to start it as soon after diagnosis as possible.
 
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