Riluzole

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st123

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Dad started Riluzole last week and isn't feeling well. He wants to try it a bit longer and see if he feels better, but meanwhile, he's losing his appetite :(

Hoping it turns around soon.
 
Sharlene,
I hope he gets his appetite back, it's important to keep his weight/strength up.

I have had the drug a few weeks, but haven't started taking yet.
Little scared of the possible side effects.

It's silly, but I guess starting the meds would be an admission of diagnosis for me. Still trying to hold on to the hope.

Hang in there, you're a good daughter.
Keep us posted.

Casey
 
So sorry to hear that. I started it about 3 weeks ago. My Neurologist started me once per day with a meal for a week, then twice a day with a meal for a week, then switched me to twice a day on an empty stomach. I haven't had any issues. He said some people have problems when they start taking it.
 
Thanks, LabMom. He started it on twice/day. The ALS Clinic nurse just replied to my e-mail and said to cut it back to just the evening dose for a week and see how he feels.
 
My mom had to stop taking the riluzole too. It was weird though because she didn't have a bad reaction to it immediately--it took about three weeks. She would get nauseous, then shake like a leaf, then get really cold, and then get normal over the course of 4 hours. And she had no appetite whatsoever.

She didn't think it was worth going through that twice a day, so she stopped taking it. She also started taking it twice a day right off the bat. I hope your dad gets sorted out soon!
 
Hi Casey, I missed your post earlier -weird. I think I understand why you haven't started yet. If/when you do, I advise starting it as Labmom's doc directed. Thanks for the good thoughts :)
 
Hi Weezie. Sorry that it didn't work out for your mom. It is odd that the side effects took 3 weeks to start, but everything about this disease is weird so guess I'm not surprised the meds are weird as well. Thanks for the info - hope your mom is feeling better now and eating again!
 
I've been on this a good few months now, and it is having no side effects. I know of people who have came off it and seemingly started advancing with their ALS symptoms
 
My PALS has taken Rilutek for 15 months without any side effect. He has slow progression, but we have no idea if it is due to the Rilutek, or the Dexpramipazole, or his new diet and supplement schedule. We are not thinking of changing anything though!
 
I went through about 6 weeks of nausea when I started taking Rilutek... and it started after I had been taking it for 2 weeks. I pushed through and eventually it went away. Now going through the same mess again getting on the Nuedexta... once again, will push through and hopefully it will go away. I think the benefits of Rilutek are worth dealing with a little discomfort if it gets me some extra months in the long run. So if he wants to keep taking it, go for it... it does get better!

~ Sarah
 
I don't know if changing the "timing" of the dose would help, Sharlene, but my mom was instructed to take her Riluzole at least one hour AFTER eating a meal or two hours BEFORE eating a meal. She has adhered to this schedule rigorously. She has had no side effects. Hope this helps. Good luck to you and your dad.
 
Hi sharlene...I have taken Riluzole for 5 months and take this like MP's mom...have not had any side effects. Luck to you and your dad!

Judy
 
Hi, MP's CALS: The printed matter that came with my Riluzole instructs me to take the tablet one hour BEFORE or two+ hours AFTER meals. -No problems experienced during a year and a half on the drug.
 
I was told by my neuro hour before eating or two hours after. I had some nausea at first but no problems other it tastes awful. So glad we can crush it and use my peg for it.
 
Thanks for the info, all. He's going to stay on it for now. Just once a day this week, then back up to twice a day next week.
 
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