Riluzole question

[Sunvista]

My neurologist has prescribed Riluzole 50mg twice a day. He told me to reduce the dosage to once a day for two weeks to see how I tolerate it. After three pills I am already experiencing loss of appetite. As a new ALS victim (is this the appropriate term?) it doesn't seem to be a good time to be losing weight. Is loss of appetite a temporary side effect?

 

[JimInVA]

My PALS did not feel any loss of appetite when beginning Riluzole. Of course she did not begin it until over a year after first symptoms. During that first year, however, she did have a loss of appetite and lost a considerable amount of weight. That weight loss did not stabilize until her nighttime breathing difficulties (cause CO2 buildup) were abated through the use of a BiPAP. I would think that a week of low appetite would not cause too excessive a weight loss. And, recognizing that you're not hungry, you might try nibbling on small snacks rather than trying to tackle an entire meal that you are not interested in. I hope this passes quickly...

Jim

 

[Graybeard]

I lost 60 lb before diagnosis and Riluzole, so I had already lost most of my appetite. Tried, but could not eat enough, and lost another 6 lb. The PEG saved me, and I'm now up 9 lb.

I take one pill at pee call in the night, and the other about 12 hours later, sometime in the afternoon. That makes less disruption of feeding.

No food two hours before, and one hour after the pill.

GB

 

[Nikki J]

I found it temporary. It was a little more than loss of appetite I was queasy as well but it lasted only about 3 weeks. Now I am anxious for the hour to pass so I can eat!

 

[Janie H]

I wouldn't give up on it, I have had no side effects.

Janie

 

[Schmidhogan]

I experienced nausea to begin with but that resolved so give it more time. In my case after a few months it blew out my liver panels so I've been off it for the last six months. Maybe I'll go back on if the readings come back down to normal. It's an expensive drug with very modest benefits.

 

[Graybeard]

My PVA rep told me the vets he's known who refused Riluzole went quickly, while the one on Riluzole lasted better and longer.

GB

 

[Sunvista]

When I force myself to eat I also get queasy. I'll give it a few days. I don't want to feel like this for a couple years just to buy an additional month or two.

 

[GregK]

SunnyV, you might consider Boost or Ensure. 350 calories and reasonable nutrition.
Pretty easy to slug down quick.

You can also toss it in a blender with peanut butter and/or a banana.

 

[Graybeard]

Go to the VA nutritionist. They prescribed 6-8 Boost+ daily for me. 6-7 cans daily through the PEG are my entire diet, and my blood numbers are excellent.

A neighbor's adult son was in accident, and went several minutes without breathing. They pegged him and put him on constant feed - 22 cans a day. Now, after several years, he walks daily a mile to Del Taco for lunch. I don't know if he'll ever recover short term memory, but he's making progress.

GB

 

[gooseberry]

My husband had no nausea type side effects from the riluzole. He has however developed a distinct scent to his sweat. He said he noticed it shortly after he started with his new meds. We dont know that it is the riluzole because he started with anxiety meds as well at the same time. I think it is more to do with his metabolism and progression since I first noticed it when his progression started to change.

 

[DreamsEnd]

My husband was on Riluzole only 10 days and ended up in the hospital with an extremely severe migraine and he has never been headache prone. We discontinued.

Sherry

 

[cheerleader]

Greg, the plain Boost is way less calories. To get the 360, need to use boost plus. Our VA is sending it as a prescription (which I'm sure you knew!). Sure does make for a full recycling bin!

 

[GregK]

Yep I should have clarified that! I do not yet have a feeding tube, and the VA nutritionist gave me some pointers. No prescription yet. She did briefly consider the powered stuff (which I suspect says Instant Breakfast) but wanted to see how I do on my own first.

I did discover a Boost VHC (very high calorie) with 530 calories. Off Amazon it appears to cost the same as the stuff from the stores.
---
I've been on Riluzole since the start. No problems.

 

[MaxEidswick]

>You can also toss it in a blender with peanut butter and/or a banana.

Sandy uses whole choc milk, a banana, 2x tbls nutella or peanut butter = 700 cals
plus fruit smoothie = 350 cals plus gazpacho for fiber. 2x of each, 2200 cals/day

haven't lost a pound since feb. kinda boring tho ...