rilutek, pls help..

[nebrhahe53]

Janie, I read the average lifespan for someone with als is 1000 days from diagnosis something like 2.5 years. So if riluzole extends life by 10% that is just about 2-3 months. Of course what part of that lifespan is extended. The part where you have to be hoisted to the rest room and become incontinent... Well I could do without that life extension.
I think there are better drugs now but the FDA won't let us use them. Nuedexta, which I am taking for " pseudo bulbar effect" has allowed me to eat for 8 more months and who knows if that's why I can still talk normally.
But insurance won't pay for any drug the FDA doesn't certify. For people in our situation the FDA should let us be guinea pigs if we choose. If I have to die, I'd at least like to make the death meaningful by contributing to science.
By the way my career was to construct statistically significant experiments, and in systems a lot less challenging than the human body.
If I had ever proposed a 2 year experiment with 15-20 data cells I would have been laughed out of the room, and then justifiably fired. It's no wonder stage 2 trials don't work in stage 3, you need a lot more stage 2 data. This is why essentially no progress has been made in als for 20 years.

 

[Nikki J]

I don't know where you get the idea that the extension is all at the end of the disease process. As it acts to slow progression at worst it extends each stage a bit but there is research that seems to indicate that as the disease progresses we lose the ability to transport the riluzole to where it needs to be so if that is so the effect is going to be more early in the process. It is not the miracle we need and for fast progressors probably not worth it if there are side effects but for some of us delaying the totally dependent phase by a month or more we may find it worth it

 

[GregK]

16 replies and not one referenced the Sticky in this forum regarding Riluzole!

Regarding the negative comments from various neurologists, see this comment in the Sticky:

There seems to be a lot of misinformation and downright ignorance surrounding Rilutek. Neurologists are among the offenders.​

The Sticky is at the top of this General forum here: https://www.alsforums.com/forum/general-discussion-about-als-mnd/25882-riluzole.html

 

[gooseberry]

All I can say is when Steve was diagnosed, he was progressing rapidly.They figured 3 months to wheelchair 24/7. He started the riluzole and it helped him immensely. The cramping, fasciculations, and muscle atrophy stabilized. It let us have some great trips and time together and time to build a plan. He is still taking it now 11 months later. Breathing is more stable and yet limb use and muscle atrophy has still progressed.

I think it really has helped him. He is now where he can only walk a few steps and is pretty much ready for the pwc. But that is 8 months after predicted. So would I take this medicine, I would absolutely try it. It has improved his life, and by extension or families, for this past year. And no , he isn't at the end.

 

[tripete]

I believe Gooseberry is right "I would absolutely try it". It should be tried. If it causes you problems then stop. I think our goal is the best quality of life we can have. If it assist in the quality then continue it, if it does not then stop.

In my short time with this disease I have come to find that it creates so many different variable for every different PALS. We must try anything we can that we believe will help our situation and improve our daily lives.

 

[MaxEidswick]

>In my short time with this disease I have come to find that it creates so many different variable for every different PALS. We must try anything we can that we believe will help our situation and improve our daily lives.

and keep pushing!

also remember the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

ALS is about living, not dying!



Max - Sunday, April 05, 2015 1:33:45 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


.

 

[Barbie]

Even though my husband has never taken it, I agree with Pete. but no regrets if it is not for you.

 

[wwroot]

See if Azilect is available

 

[wwroot]

Azilect stops our neurons from dying

 

[Nikki J]

Azilect is promising and may indeed protect motor neurons but to say it stops our neurons from dying as a flat statement is optimistic. I know at least one person who took it for a long time. He progressed and died. Perhaps more slowly than he would have perhaps not

 

[MaxEidswick]

>Perhaps more slowly than he would have perhaps not

that is always the question -- no telling what works :-(