Riluzole

[st123]

Ugh, stopped it completely now. He has lost 10 pounds in less than two weeks. This is all so complicated. Not sure if the weight loss is due to the nausea as his eating habits hadn't really changed up until the last day or so. It could have been due to muscle loss or just the extra work his body is going through to breathe or a combination of everything. He has had a low grade fever the past couple of days. Maybe it's the meds, maybe he's getting pneumonia from the aspiration, maybe he just has a cold... The nurse was here yesterday and said to wait a few days after stopping the Riluzole and see if he feels better, but to let her know if his temp gets worse or he starts coughing (which he really can't do much anymore). Ugh.

 

[panguinjen]

Sharlene,

I'm sorry your dad isn't feeling well! Rog has been on the riluzole since August. Started with one tablet then went to two. He takes is one hour before eating. It started out making him tired, but he's not complained of other symptoms. He doesn't eat when he has a cold and he had one in December and one in March/April; both which caused significant weight loss. Get him a cough assist if you can, along with a compression vest to help with removing mucous and stuff in his lungs. Do you have a suction machine as well? Does the riluzole help? I don't know, but we are trying. My thought are with you!

Jen

 

[JLRNL]

I have been taking Riluzole 50mg twice a day for 1 year now, no problems liver still good. Is it helping who knows.

 

[jb63]

I have been on riluzole for 5 months and not problems other that the initial sleepiness. I know many people cannot tolerate it and lose weight. Maybe a peg might help if the nausea has passed and his appetite is poor. You could get his weight up as this is very important for us. Many people who have no bulbar involvement but experience big weight loss get the peg to fatten them up for the fight.

 

[st123]

Hi all, I think he's giving up on it, at least temporarily. After 3 days off it, he's feeling tons better and has gained two pounds. The physical therapist was truly surprised at his improvement today, compared to the last two weeks. So far, he has said no to the PEG. It wasn't discussed at his last clinic visit and I'm not sure it's even an option any longer as his FVC is so low (30% a few weeks ago).

 

[kiwisally]

Hey sharlene, glad to hear he's feeling better and put on weight. Sorry about the other issues.

 

[st123]

Thanks, Sally