Do Rilutek side effects disappear?

[mprinci]

Rilutek was prescribed for a friend in the UK who is newly (2 months) diagnosed with ALS. He took it for a few days, but felt so "weird", rather dizzy and nauseous, that he stopped taking it. His doctor insisted that he start again, which he has done, but he complains of the same side effects and really wants to stop again. He is also taking lithium carbonate. He just got a breathing apparatus and feels much better thanks to that. My question is-- do Rilutek side effects diminish with time? Has anyone experienced the same side effects? Does anyone report improvement in their condition with Rilutek? Is anyone using lithium carbonate with or without Rilutek? If so, are there any positive results?
Many thanks. Offlist replies also gladly received: [email protected]

 

[Katie C]

Rilutek doesn't improve things... merely slows down progress, maybe, for some people. Glen had little trouble with side effects. His neuro did blood tests a couple months in to make sure Glen's liver was ok. Our neuro's feeling is the benefits of Rilutek are so iffy at best that he prescribes it, but if his patients want to stop for any reason, he's fine with that and won't push it.

 

[indigosd]

My husband had the same side effects and after three miserable weeks he stopped taking it. You can put Rilutek in the search box and you will find a lot of posts about it. Good luck.

 

[Big Mike]

I'm still taking Riutek after almost a year, but I feel it is a useless drug. Lithium results in trials have been very disappointing. You might have better luck with a high fat diet, marijuana, and ursodiol.

 

[Al]

The cross Canada lithium trial was stopped early because of bad results. I believe most in the U.S. have quit as well. Rilutek is the type of drug that doesn't show any signs outwardly that it is helping you. Personally, I think it helps.

AL.