Linda, do you think Rilutek is that bad ?

Jimmie,
Gary's experience with Rilutek was not good...he progressed like a freight train when he started taking it the first day of diagnosis..the months before diagnosis when symptoms were present but he had no formal diagnosis of what was wrong..as no testing had been done..it moved much slower..
I can't blame Rilutek for the speed of progression..as I feel the stress of knowing he had the disease was probably what made it go faster...
I will say this however..his own ALS specialist encouraged him to come off of it 6 months into his disease process ..he said although it may help some people...his experience with the drug in his patients was not all that positive. that many of his patients dropped it...he asked Gary if he really thought it was of help..Gary asked with an extension of 3 months survival how would I know ? ..His ALS specialist agreed to keep prescribing it "only " if Gary would get ALT and AST liver enzymes checked every 3 months...after 4 years these levels did significantly rise to the point that his other docs as well felt it needed to be stopped as it was damaging the liver...but his levels returned to close to normal ranges now after stopping it..though to this day they remain a little high..
I do know of one patient here in town who almost died from liver damage due to Rilutek..as a physician prescribed it without testing liver enzymes at all... he was very fortunate to get Gary's ALS specialist involved in his case in time to identify the cause of the problem...and to reverse most of the damage by having the Rilutek stopped..
I knew another man in town ... who took Rilutek day one of diagnosis (who was diagnosed at the same time as Gary ) and died within 3 months of being diagnosed..of respiratory failure...where was the three months extension of life by Riluket in his case ?
I know many people on various forums who have lived for many years and are still quite functional who never took Rilutek at all..
Saying all of this.... there are people who swear by Rilutek..and it may very well benefit them ...but here is what I was told by his specialist..Rilutek blocks excessive glutumate...but we know it is not the main target in ALS or it would work better..there is also a question of whether or not excessive glutumate is even a problem in "all" PALS ..
Gary's specialist opinion on the drug is that if a PALS takes it they should have liver enzymes monitored every three months...Lisa