Need input on Riluzole

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Steven B

Active member
Joined
Apr 8, 2011
Messages
38
Reason
PALS
Diagnosis
04/2011
Country
US
State
California
City
Bellflower
If anybody has an opinion on the only medication my Neurologist told me about and said I would need to have my Kidneys checked every month. Is it worth it
 
I cannot answer your question- sorry. What I can tell you is that it is very expensive. Your insurance may or may not cover it.
It is supposed to extend your life by a few months. Sometimes it does. Sometimes it doesnt. Its hard to tell how a person wouldve progressed without it.
Someone with personal experience will hopefully chime in...
 
If ALS affects everyone different, How can anyone say that it extended there life by 3 or 4 months? has anyone said Hey, I would have died 3 months ago if i did not use it.
 
thats a good question and ive always wondered this myself. how the heck do they know?
 
That is what I thought. They say it was tested on rats.
I wonder if they had wheelchairs for the rats.
 
and i think, but dont quote me on this, that the form that rats have is different than the form that people have. by that i mean the kind of ALS. not sure, but I thought i saw one of the older guys on here post something about that.
I would think it might be worth looking into to see if your insurance will cover it. if so, try it out. if you dont get bad side effects, maybe it would be worth it... not sure
 
Not sure yet I need to see my local Neuro. next week. I was tested and confirmed last week at the Neurological Center At USC Medical Center in Los Angeles.
 
Im sorry Steve. Hate that you got the definate diagnosis... but glad you found us here. i would die without this place.
 
Oh come on now Liz. What about Facebook
 
Hi Steve, Welcome to the forum - I'm sorry you had to join the club. I'll try to address your question. My husband, Gary, has been taking Riluzole since his diagnosis September 1, 2010. He does have his liver enzymes checked every 3 months. So far, so good on that. We are lucky that his insurance has a very low co-pay for the drug, so that was not an issue for us. Gary's progression has been slow, compared to others I've read about on the forum, but it really is impossible to know if it has anything to do with the medicine, or rather the course ALS would have taken anyway. There are a lot of "dos and don'ts" with taking Riluzole, like taking it 12 hours apart, and on an empty stomach (at least an hour before, or two hours after, a meal) in order to maximize absorption. You would have to determine a schedule that would work for you. Gary has also been fortunate to avoid any of the possible adverse side effects. It was hard not to take the drug given that it is the only thing the doctor had to offer, but it was also presented by her sort of as "if you can't afford it, don't worry about it." Good luck with your fact finding and decision.

Blessings,
Jo
 
My wife took it without any side-effect. You have to take a blood test every 3 months (more at first) to see if there is any side effect to the liver. As for effectiveness, it seems to be the only drug that proved some on a double blind test so far (They use a test against placebo with a double blind protocols to assess the effectiveness during the phase II of a clinical trial). 2 or 3 month gain doesn’t seem tremendous but still, it is something. In France it is covered 100% by insurance so we did not hesitate.
 
They do clinical trials, using a placebo cohort, then compare the statistics between the placebo group and the group on the active compound. If it's safe and the difference is statistically significant then the drug supposedly works.
Aly
 
Tom started with Riluzole 10 years ago, almost 11. He is still here, but again they introduced it as a drug trial so can we be sure he is even getting Riluzole? He only gets blood tests every 6 months, at each visit to the clinic. Ya, we only see the doctor twice a year.
If we had to pay for the drug (about 600 per month) we would be living in a tent by now, and if we were getting a placebo instead would I ever be mad.
 
During a trial, placebo is used only for the duration of the trial (6, 12, 18 months… it depends but not 10 years). After this and depending on what has been found, you can have a stage before complete results are published when everybody gets the real drug. After the complete result is published (can take a few months), if the drug is jugged ineffective, everything stops; if the drug is jugged effective, everyone gets the real stuff.
All this information is provided to every participant at the beginning of the trial.
 
Hi Steve - Welcome to the forum :-D

My dad has been on Rilutek since his diagnosis - August 2010. His progression in my opinion seems to be slower compared to others. (But what do I know ;) )Like AKjo said...I don't know if it has anything to do with the medication or not. Pete does not seem to have any side effects either. I'd say go for it if you can afford it! Good luck with your decision!

Stephanie
 
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