what do you think

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davbo49

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Joined
Sep 18, 2014
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606
Reason
PALS
Diagnosis
04/2014
Country
US
State
kanas
City
kanas
i seen my als dr and she wants me to start taking rilutek. i know i have to do a lab draw two weeks after starting on then to make sure the liver enzymes not increasing. they say it will give you more time. what do you think.
 
Reports suggest that Rilutek/Riluzole can slow down progression... adding perhaps months to one's lifespan. My PALS has been taking it since April and has had no problems with it. Has it slowed down progression? Perhaps... but we have nothing to measure against. In our opinion, anything that slows down progression enough that we can keep up with what's happening and have time to adjust just allows us to keep Quality_Of_Life in a much better mode. And that's enough to encourage us to keep the every 12 hour schedule it demands...

Jim
 
I am a big proponent of it. I really have not progressed since I started ( and I was sliding fast right before) knock on wood,fingers crossed. It has been several months now. Also definite decrease of twitching. I know I am very lucky and not typical. My sister never noted any benefit but average survival of our gene type is 2.6 years. She is at 3.4 years, no vent and she has taken it since diagnosis. It is supposed to extend your life by 10 percent If your insurance covers it you don't have much to lose. I found it made me nauseated for 3 weeks that went away. My neuro has liver tests every month for 3 months then 6 months then yearly. I have had the 3 months and my liver tests were fine. If you have a problem with it you can always stop but if you are going to take it my neuro says the sooner you start the better.
 
There is a sticky at the top of this forum about riluzole.
 
thanks guys im sold. now to see what will pay for it. kansas is funny on what they will pay out for.
 
For what its worth, the neurologists in Appels clinic in Houston-one of the leading clinics in the country, say its virtually worthless. I take it and their comments were if your insurance pays take it, but if you have to pay a large amount, dont bother.
they say they actually have a drug that they can show in studies markedly slows down ALS progression-Gilyena (finolgomid). This is approved for MS but not ALS and insurance wont pay for off label use.
They have been trying without success to get the FDA to approve it for ALS without success so far. They are very frustrated about it.
 
My father just started it.
 
My doctor at UCSF is also Luke warm about Riluzole. Blew out my liver enzymes so I had to stop
 
My husband is on it. For the first four months, we saw little progression, gretly diminished fasciculations and almost no cramping. Then it all came back with a vengeance and he has been progressing quickly since then. Is it worth it......it gave us a great 4 months together as a family...so for us it was priceless. He is still taking it.
 
Steph, when was Steve diagnosed? Onset? still able to eat? able to speak?



Max - Thursday, October 30, 2014 4:52:37 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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if you have been in to the disease for some time. it may 2 to 3 more mouths. but if when the disease just getting started it can give you up to 12 or more mouths. i know it don't sound like much. but it is a start. if you liver is not to good. i wouldn't try it.
 
My drs said that it does not make that much of a difference
 
>My drs said that it does not make that much of a difference

based on what?

>A Cochrane Library review states a 9% gain in the probability of surviving one year.

------ snip
While riluzole has been proven to slow down ALS, patients do not report any subjective improvement. Approximately 10% of patients experience side effects such as nausea and fatigue which lead them to discontinue treatment. Safety monitoring includes regular liver function tests and people with liver disease such as hepatitis should be monitored especially carefully.

In the UK riluzole has been available through the NHS since 1997 at a standard dosage of 50 mg twice daily. There has been some evidence to show that higher doses might produce more significant improvements in ALS patients but at £5 a tablet it is at risk of being prohibitively expensive given the modest benefit to patients. One study in the Netherlands found that riluzole is metabolised differently by males and females, and its levels in plasma are decreased in patients who smoke cigarettes or take omeprazole.[8] [9]

A Cochrane Library review states a 9% gain in the probability of surviving one year. In secondary analyses of survival at separate time points, there was a significant survival advantage with riluzole 100 mg at six, nine, 12 and 15 months, but not at three or 18 months.[10] There was a small beneficial effect on both bulbar and limb function, but not on muscle strength. There were no data on quality of life, but patients treated with riluzole remained in a more moderately affected health state significantly longer than placebo-treated patients.

------ end snip
 
Have been on Rilutek since Jan, 2011, just three or so months following diagnosis. No problems thus far, even with a couple of clinical studies which were fairly tough on the old kidneys. Most medics say that Rilutek increases life span by 3 to 4 months? They also contend the earlier one starts, the longer one lives. But, who knows. The VA covers the drug for those with covered military service. Can't say if the med was any help in my fairly slow progression but can say that I'm glad that I rolled the dice as I soon as I could.
 
>but can say that I'm glad that I rolled the dice as I soon as I could.

you betcha -- never know if it helps, but the alternative sucks!



Max - Thursday, October 30, 2014 11:04:32 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


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