need information about rilutek

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myrwin

Member
Joined
Jul 8, 2010
Messages
13
Reason
PALS
Diagnosis
06/2010
Country
CA
State
ontario
City
oshawa
I was dignosed with als 2 weeks ago, i started losing my voice about 1 year ago and so far that is really the only difference that I have noticed. My voice is nearly gone now and only a very few can understand me, my husband, and sister. I was put on rilutek 2 weeks ago and I would like some info on it, does it help , what are the side affects and so on. I still have a hard time believeing that I have als as I have no other s ymptoms.
 
Our BCBS does not want to pay so now trying to see how we might get it.
 
Joni you should talk with Nicole and see if they can send some type of information about your husbands diagnosis to your insurance company. I would keep pushing your insurance company.
 
Fight...they will pay! It is the only approved medication for ALS....do not take no for an answer. Good luck and keep us posted.
 
as sadie says, most people dont notice a difference - i've been taking it for 11 mths, disease progresses, but what would have happened without it? you cant do 2 realities at once - if the only effect is a positive psychological one that you are doing whatever you can then sometimes that is enough reason.
tony
 
I noticed fatigue at first (been taking it since August), but that went away. Fatigue is a symptom of ALS, anyway. If your insurance covers it, take it. Supposedly, the earlier you start, the more effective it is.
 
Thanks everyone for all the information, I am new on here so I am trying to read all I can about the medication and the disease.
 
One thing: It's important to have your bloodwork for liver function once a month for the first three months, once every three months nine months, then occasionally. Like many medications, Rilutek can cause liver problems for some.
 
We live in St. Louis where we are blessed with two ALS clinics. My wife was diagnosed at Barns/Jewish hospital and our doctor there suggested that rilutek was not worth the effort. In January we switched to St. Louis Univeristy Hospital ALS clinic and they highly recommended it. My wife declined to take it. I guess my point if, even the experts are divided as to it's usefulness.
 
i recently upped my dose from 100mg to 200mg daily [ 3 weeks now] and there has been a very noticeable reduction in fascics. i continue to lose strength in my legs, my right arm remains 100%, my left arm is 0%, left hand 10 %, breathing 40%, no bulbar signs [but with no family history of this either - 8 people over 3 generations all <12mths term]. but hardly any fascics - they are still there, but barely visible now. but then, i am only 5 months in from diagnosis now too.
tony
 
Was that your choice to double the dose or a recommendation?

I've been told reduction is fasciculations is a bad sign and once they stop completely means your muscle in that area is no longer.
 
Looks like if you've been on it for 18 months or more you might as well stop. This is from the Rilutek site>>>

While it is not a cure, RILUTEK has been shown to significantly extend the time before invasive breathing assistance is needed and/or survival time (an average of 2 to 3 months longer than people that took a placebo). After 18 months of treatment, there was no difference between those who took RILUTEK and those who took a placebo. What this means is that, in clinical trials, RILUTEK offered a survival benefit early in ALS treatment.
 
I took it for the first year after diagnosed even though it cost $200 a month after insurance. my doctor who is an ALS specialist, suggested I already had the full effect and to use the money for something more important
 
Looks like if you've been on it for 18 months or more you might as well stop. This is from the Rilutek site>>>

While it is not a cure, RILUTEK has been shown to significantly extend the time before invasive breathing assistance is needed and/or survival time (an average of 2 to 3 months longer than people that took a placebo). After 18 months of treatment, there was no difference between those who took RILUTEK and those who took a placebo. What this means is that, in clinical trials, RILUTEK offered a survival benefit early in ALS treatment.

I believe this observation of limited effectiveness after 18 months is now considered uncertain. The American ALS Association now says "Reports from three separate patient databases described long range experience with Rilutek®. All three reports suggest a trend of increasing survival with Rilutek® over time. More studies that are double blind and controlled are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the Rilutek® clinical trials may be needed to see the long-term survival advantage of the drug."

I read parts of the very large Irish retrospective study on the effectiveness of rilutek/riluzole and very clearly came away with the belief that the longer you take it, the more effective it is. I delayed taking it until after a year post-diagnosis for the exact reasons quoted previously. That it has limited use so I was "saving" it. I have now taken it for several years.
 
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