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4rhl1981

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How can they say this drug slows the progression of ALS when they can not even say how it works, how do they prove it? How do we know that they are just not ripping people off, they say it extents life for 2 months thats it? I wonder how much they paid the FDA to get it approved? If it does truely slow the process down then why have they not poured more money into futher research of this drug?
 

BethU

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May 11, 2008
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PALS
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I understand that researchers discovered the benefits of Riluzole simply through clinical trials statistics. A group of patients who were given the drug lived 2 to 6 months longer before needing a trach than did a group of patients given a placebo.

I'm sure that more research is probably being done on this drug, as well as on dozens ... hundreds? ... of other promising treatments.

If you feel it's a rip off, don't take it. My own advice would be to try it and see if it helps you. I tried it for a month and felt it made my symptoms worse, so stopped it. But a lot of patients find that it reduces their symptoms and seems to slow the progression. Every ALS patient needs to decide for him/herself.
 

Jennifer51

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How can they say this drug slows the progression of ALS when they can not even say how it works, how do they prove it? How do we know that they are just not ripping people off, they say it extents life for 2 months thats it? I wonder how much they paid the FDA to get it approved? If it does truely slow the process down then why have they not poured more money into futher research of this drug?

Ripping people off...well in the UK we only have to pay a small amount...approx $10 for the prescription, which, depending on who wrote the note, could be for anything up to 3 months...and I can assure you that the UK drugs people definately would not pay for it if they thought there was no benefit from it. I also saw a top uk neuro...world reknown, who told me that it can extent life by up to 20% so if you are diagnosed early, like I was, the benefit in life terms could be up to 7 months....I am going for that....How does it work? I really dont care...it DOES work for me, it HAS reduced my symptoms. I know I am one of the lucky ones with this drug and so far I have not had any side effects. I am so happy with it, that I often question why I cant take a higher dose...though I know I cant. SO hey, bring on a cure...I dont care how any of them work, I just want something to work...my life is too precious to me to worry about HOW it works...just let it work
 

Big Mike

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Jan 2, 2009
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322
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PALS
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12/2008
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US
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Montana
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I just started Rilutek the other day (April 15th.) I've had some issues with my liver in the past, so I will need to regular blood check-ups to see how it's affecting it. I certainly think it's worth a try.

There's a lot of medications out there that aren't completely understandable in terms of how they work but that certainly doesn't mean their ineffective. For instance, I take Luvox, an SSRI, for my obsessive-compulsive disorder; researchers still don't know exactly how these types of drugs work, but I can tell you from experience that they do.
 

patricia1

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newjersey
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lopatcong NJ
Mike The side effects are not worth it
Pat
 

JamesMcC

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PALS
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01/2009
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idaho
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V
Well,f you study the trial results rilutek in the end makes no difference after 2 years of diagnosed.I am going to stop taking it.It tires you out ,at least me.Not worth it.As they say taking a cheap supplement is just as good...ie vit E.It s a waste of money.I fyou take it for 5 yrs you have,by their trial added a day a month and this is to delay ......
As I said the end result after trial was the same.Side affects ...im not paying $5000 a year for thx.
James
 

JamesMcC

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PALS
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01/2009
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US
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idaho
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V
Put it this way..
you are either going to survive 2 yrs,4 yrs or 10 yrs and rilutek is not part of it.It is part of it ,maybe in the stages where progression is fast..ie diagnosed kto 6mnths it may help as i said to delay life support.After that...it doesnt do anything as the trial states.My opinion.Everyone has their own.I have 3 week supply left..took one this morning and that is my last.
 

BarryG

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Nov 19, 2008
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Other than it lightening my wallet by about $80 per month I haven't noticed any side effects at all.
 

BethU

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PALS
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05/2008
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California
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Los Angeles
FYI ... I was reading the May MDA/ALS Newsmagazine last night, and it answered one of the questions I've had about Rilutek ... does it extend life at the END of the disease or earlier?

The newsmagazine said it extends the LESS SEVERE stages of the disease, which is very good news for those who get benefit from it. i.e., it slows down the progression.

Also, the article said that in fact scientists do pretty much understand how it works. They believe it "interferes with the action of glutamate, a chemical transmitter of signals in the central nervous system that ... can damage nerve cells." (But I thought ALS started in the brain. Hmm)

The trial statistics are: After 18 months on Rilutek, 56.8% of PALS had survived without trache. After 18 months on placebo, 50.4% had survived without a trache. The trial ended at 18 months, so there are no statistics on how Rilutek might extend life beyond 18 months, but I would guess the benefits would keep on increasing over the placebo group. (Why would Rilutek stop working just because the trial stopped?)

I hope somebody is keeping track of PALS on Rilutek and how long they survive beyond the 18-month trial cutoff.

It made my symptoms worse, unfortunately, so I stopped after a month, but if I had not had unpleasant side effects, I would come up with the $$ somehow. (Anybody want to help me rob a bank? Oh, that's right. They don't have any money these days either. :lol:)


Speechless in L.A.
 

JamesMcC

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105
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PALS
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01/2009
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US
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idaho
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V
Yes it may help as I said above in the early stages and if you read the results of the trial at the end of every article it says ........

Among the patients in whom treatment failed during the study (tracheostomy or death) there was a difference between the treatment groups in median survival of approximately 60 days"There was no statistically significant difference in mortality at the end of the study.

That was my whole point.After whether it be 18 months or 36months riluzole does not help.It's simple statistics and math.So once a pals reaches that critical time or goes on support it doesnt do anything.Hope you understand the math.
James
 

JeffP

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Jan 8, 2010
Messages
293
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PALS
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08/2009
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US
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MI
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Iron Mountain
ive been on it 11 months so far no side effects but in havent noticed anything good about it it seems to me it has horrible side effects and damages the liver to me like mike says is it really worth it you do the math .i went today to my nuro.and showde her an article about antioxidantsand it was published may 2010 to slow thebprogression of als and the side effects dosent come close to rilutek im having blood work next week id my liver enzemes are way up she said to go ahead and do the antoxidents
 

JeffP

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Joined
Jan 8, 2010
Messages
293
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PALS
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08/2009
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US
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MI
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Iron Mountain
4hrl1981 ,i like your point of veiw on this issue fda approved they will approve anything for a buck just like all there so calles testing.they been selling us soup and food fda approved with mono sodium glutamate which causes cancer and is said to be something in us overexcited that builds up and releases to cause als.second the fda approves vitamins has anyone checked out what there really taking .example centrum silver has abot 4 percent thats it in the bottle.they weight the fillers binders capsule and what rooms left the vitamin so the label lies look it up you will see .pharmicutical garade vitams are well monitored and has to meet the standards of atleasy98 percent .so ask yourself how do we trust the fda
 

Al

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Joined
May 25, 2004
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PALS
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10/2003
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CA
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On
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NW of Toronto
Nothing has been proven to cause ALS jeff. Making statements like that are wrong and add to the misinformation on the net.

AL.
 

Buddha Nature

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May 30, 2010
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CA
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BC
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Mill Bay
My partner is on Ritizole - he has had no serious side effects and feels that the medication has slowed his progression down - he was diag. over a year ago now and has lost most of his speech - he just recently had the Peg-tube put in due to swallowing issues and he is now on Bi-Pap......
 

scouse

Active member
Joined
Mar 3, 2010
Messages
37
Reason
PALS
Diagnosis
04/2010
Country
uk
State
merseyside
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liverpool
Hi
I started Rilutek just over 3 weeks ago and for the first 2 weeks I was so tired and my legs felt like led, my speech was worse because I was tired all the time so I dropped the dose to 1 per day I still feel tired and my speech is still slower than it was so I dont know if that is the medication or progression I see my neuro next week so might suggest I come off to see if any changes my MND is supposed to be slow progression;)
Take care
scouse
 
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