Rilutek side effects

[trtt]

Hi to all, wanted to ask if anyone out there has had a side effect that my mom is experiencing after takeing Rilutek. She started taking Rilutek and the very day she started she called me and said that she was feeling very strange. She described to me that she was feeling like she had electrical pulses going up and down her body and in her head as well. So many of these pulses that the 1st night she couldn't sleep, I didn't think this was good. I asked her to call her dr, and it was about 3 days later her Dr. office called her back and her Dr. said to stop taking the Rilutek. He hadn't heard of this side effect from any of his patients. Has anyone out there had this side effect? If so did you stop the Rilutek?

Thanks for all your help
trtt

 

[tdamess]

i just read somewhere that it made some people fluctuations worse my son it helped , and other have said they dont like the side effects not sure what they are but, they will come along to tell you but... to me if she is telling you she feels strange on them believe her the side effects may not be worth the time it may save her for a short period ...to be unwell feeling sometimes just aint worth it

 

[beverly rees]

My husband tried the rilutek twice since his diagnosis in October 2008 and immediately got weaker. Bev

 

[GlenBrittle]

I yawn a lot.

 

[Al]

I had some stomach issues but can't recall anyone complaining of electrical impulses. Is she taking something else that might be reacting with the Rilutek?

AL.

 

[BethU]

trtt ... I had increased twitching that got worse and worse. It wasn't twitching at the end, my whole left arm was jerking uncontrollably, so that I could not type. I went about 25 days with it, I think. Never finished the first prescription.

The twitching/jerking stopped when I stopped the pills.

 

[JeffP]

i been on rilutek for 2months now i dont notice any change at all with it.i must have a hard gut or something

 

[tdamess]

i been on rilutek for 2months now i dont notice any change at all with it.i must have a hard gut or something

it is not something you will feel it wont change anything --it is just to slow progression down and only a little a few months i believe

 

[Madison1943]

When I first started taking Rilutek, the next day all the twitching in my legs stopped cold. They started up again the next day but that was proof to me that rilutek really did inhibit the glutamate that kills the motor neurons. I believe the drug helps me, even a little and it's worth taking and paying for it after Medicare dumps me in the donuthole and quits paying for it. I've never felt the least side effect for Rilutek, but I take so much crap for back pain, etc. that I'd never know where side effects came from anyway. I could never isolate the effects. Fortunately I can tell that new drugs caused my legs to shake. When I stopped taking them, the shaking ceased. But I never had any problem with Rilutek. Hope this helps.

Carol

 

[AlleyTurner]

I have taken Rilutek for ten years with no bad side affects. Are you taking it twice a day on empty stomach. I take one at bed time . and one early am then I take a nap as we get up early when my husband goes to work. With the Rilutek , Bi-pap sense 2001, Good nutrition, keeping healthy, good care has all kept me living with ALS !

 

[trtt]

Hello, thank you for your replies so far. I would like to know what other kinds of vitamins and other supplements you all are taking. I am already taking many different kinds of supplements and closely watching my diet. Thank you very much for your support and responses.
Alicefaye

 

[BrianD]

Alicefaye...

I think PLM is very good at answering your question about what other PALS are taking for supplements etc.

But come back here when you are done! This is a great support forum.

Brian

 

[mare]

Anyone have an increase in blood pressure after being on Rilutek for awhile?
It is listed as a rare side effect; trying to figure out where hubby's hypertension is coming from. (I know, I know- that's up to the doctors. Can't help but doing some investigating myself. Point them in the right direction-LOL!)

 

[Al]

My blood pressure has gone down.

AL.

 

[tajmom]

My blood pressure hasn't changed at all and I've been on rilutek for about 16 mos. It only goes up when I go to the neurologist. Don't get me wrong, I adore my neurologist...maybe it's the memory of sitting in there getting the worst news of my life that gives me bad vibes.