Riluzole

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Sam63

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Joined
Aug 23, 2015
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16
Reason
PALS
Diagnosis
06/2015
Country
US
State
va
City
chesterfield
Is anyone still taking Riluzole/Rilutek? Pros/cons, anything will help. I'm considering stopping it.
 
I am a big supporter of Rilozule. If you haven't already, read the stickie about it. Taken early, rilozule can slow down the progression of ALS. That's been my experience. I had rapid onset and once I was on the rilozule for a few weeks, I noticed that my symptoms began to plateau. I was tempted too to go off it because of nausea. But a doctor prescribed Metonia for nausea, and once my body had adjusted to the rilozule, I went off the anti-nausea medication and was fine. No side effects since. It is the only drug there is that in any way impedes the progression of ALS, and I'm convinced that my life has been extended because of it.
- Charlene
 
I too believe in riluzole. Why are you stopping? Side effects or cost? If you just started it as Charlene says side effects often go away and it is completely true you get more benefit if you start early
 
Going into my 3rd year on it.

The Search feature will give you more info.
 
My husband stopped taking it last week after being on it a month. I was against it but he was sick every day, exhausted and downright depressed. He is back to his cheerful self now so I guess it just would not work for him. He keeps saying why should he live longer if he feels that bad. Maybe the symptoms do go away but he was not willing to stay on it any longer. Doctor agreed. I guess my fears where and are of the what if's and he is about the now.
 
Add me to the fan list. As far as any fatigue issues I take the morning one when I get up to go to the bathroom early in the morning and then go back to bed for a while and when I get back up I'm fine.
 
have been on the med for four and a half years. it is a no-brainer if your insurance covers it. a little pricey if there is no coverage. insurance coverage is the tie breaker for many people...
 
Sam, this dichotomy about pros, cons, fans and not is a bit simplistic. Like any drug capable of doing good, riluzole can do harm. It can also fail to do good.

Search pubmed for numerous abstracts as to the subgroups in which efficacy is most possible. You will see that the most recent Cochrane review (2012) summarized the median benefit as 2-3 additional months of life.

If you and it don't agree, you may be able to improve tolerability if you want to, but in most cases it is unlikely that you are substantively changing the course of your progression by either taking it or not. For those here who think it has helped them, that's great, but this drug is not water and the risk/benefit ratio is not favorable for everyone. As with many drugs, if you listen to your body, it will give you the answer you seek.

Best,
Laurie
 
I have read some of the side effects that people are having and saying its damaging their liver, just really scared me. It only cost me $20 and I've had no real side effects from it. I have to take it with some food and by the end of the work day I'm exhausted. I seem to be tolerating it well and the ones that are still taking it seem to think it helps. So I think I'm going to continue to take it rather than take a chance and rock the boat
 
Your doctor should have set up follow up liver tests. I believe my schedule was monthly x 3 then every 3 months x 3 then annually. Fat interferes with the action of riluzole but nonfat food is fine with it or in the 3 hour recommended window according to my neuro
 
I've been on it for 5 months and will continue taking it. I'm at a 40 on the functional scale after 18 months onset of symptoms. Maybe it is helping, maybe it's my body fighting but I'll continue taking as long as my progression is slow.

Vince
 
I have been taking Riluzole for a couple of months. On Patients like Me forum only 19% of the people with ALS are taking it. I read another study where only 12% were taking it. I am wondering is it the side effects, costs or something else that only 12 - 19% of people with als are taking it?
 
Were you able to filter out the people who do not have their profiles filled out? The plm concept is great but some people registered but never filled out profiles. Some people are dead but plm does not know. I know of at least 2 people who are aymptomatic gene carriers who registered and list ALS as their condition. Understandably as that is why they are there. My point is I am not sure the statistic is accurate. Can you share the source for the 12% study?. But there are certainly people who do not take it, cost and side effects are big reasons. So is the perception that it does not provide enough benefit to bother. I still think if you can afford it it is worth a try and if you do try it is important to follow up with liver tests even if you feel ok on it.
 
Steve takes it. Things were moving along very quickly when he started it 15 months ago. He has had some progression since he started it but progression has slowed considerably. His liver enzymes fluctuate but he was told 3 to 5 times normal is the yellow zone and above 5 times normal they stop it.
 
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