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.