Rilutek and Nausea

[tripete]

Recently I have been having a lot of stomach nausea (for the last two weeks). I have been on Rilutek since the middle of December and it has just begun. I found some older post that said Rilutek could be the cause. My last liver test did show elevated enzymes but my doc said it was ok and I should continue. I was not having nausea at that time.

I have stopped taking all other vitamins but the nausea has continued. I am considering stopping the Rilutek, but will contact my doctor ASAP. Any thoughts?

 

[Graybeard]

Never bothered me in over a year, and I am faithful with the No Food two hours before, one hour after.

 

[Nikki J]

I expect your doctor will want to recheck blood work. If it is within acceptable limits and you want to continue consider taking it with something fat free as opposed to empty stomach. I was told by my doctor that the issue is fat not food and as long as you adhere to the 2 hour one hour rule with food containing fat it is ok. I do like graybeard and just don't eat but that is because I tolerate it ok.
I know some people also end up taking it once a day because of tolerance issues. I hope it works out

 

[gooseberry]

Climbing liver enzymes can have this effect in some people. I would mention to your doctor and see if you can get your bloodwork done a little early.

 

[Graybeard]

I usually have enough saliva to swallow it without water. Today it stuck in my mouth and made it a little numb... ?

 

[Nikki J]

Totally normal graybeard.

 

[MaxEidswick]

> made it a little numb

I have a bad tooth and that is my am treatment

 

[tripete]

My Doctors ALS nurse just wrote me and said "You can take it with food! Seriously I wish they would take that instruction out.... Some people do fine on an empty stomach but it will work fine with food....Try that and see how it goes...,"

This does not sound right from anything I have read? I am seriously thinking about not taking it.

 

[Nikki J]

As I said above fat free food is fine but If you eat fat with it will decrease effectiveness however I would want another liver panel done before I kept taking it.

 

[tripete]

I apologize if my last comment was harsh. I am just very frustrated with this whole syndrome, and the complete lack of knowledge about it.

The only thing I have is to try and make the quality of my life as good as I can for as long as I can. Spending days with nausea from a medicine that we truly do not know if it actually works, and that if it does work only gives us a few months, does not seem like a good way to go.

I wish there where more answers as to how to help us. No one knows how to help us. It truly sucks.

 

[anderkling]

I wonder whether it would help relieve the nausea to take the Rilutek with fruit or fat free food, as has been suggested. It's worth a try. I hope it helps. Since you were diagnosed in December and started the med early on, it may have more of an effect than extending life by only 2 months. I started Rilutek in mid January, and I am experiencing some nausea as well. But I also notice that my rapid decline has slowed down somewhat. My nausea, though, is bearable at this point in time. You will have to weigh the odds. I understand completely your statement about enjoying the time you have, and a lot of nausea would seriously affect that. Yes, this disease is tough and really, really difficult to accept. No one understands that more than those who are afflicted.

 

[MaxEidswick]

Sandy gives me mine with juice 1-2 hours before my fruit smoothie ...

 

[mpnatx]

When first prescribed, I took Riluzole for three weeks. I thought I had the stomach flu so I stopped after three weeks. I felt better after a week and resumed taking Riluzole. Three weeks later, the same thing. Nauseous and tired again. I stopped taking the Riluzole and several days later I felt much better and my appetite increased.
I have not taken it since and have gained 5 pounds. I guess I couldn't tolerate it.
Marty

 

[Jeanau]

I too tried the Riluzole two different times, and both times I was extremely nauseated and tired. I had raised liver enzymes and fatty liver syndrome before I was ever diagnosed with ALS, so I'm sure that didn't help the situation. So, for now I'm not taking it. I have my first clinic next month, and maybe we'll talk about it there. But, I don't want to be sick every day of my life on top of growing weaker every day. Good luck to those of you who can tolerate it well!

 

[starente15]

My dad took it for a month. Didn't have nausea but started complaining food didn't taste good and he didn't have an appetite. He started losing a lot of weight quickly. Stopped taking it and everything reversed in a week. At the first clinic the doctor said to try to start it again once a day. Fine for a week the appetite problems started again so we stopped again.

You're right Pete, it comes down to quality of life. My dad loves to eat and Its one of the last things he can still enjoy. We had clinic #2 today and he has progressed only very slightly. Not sure if riluzole would have made much more of a difference. His FVC was 32 and I'm guessing that's not great but it is what it is.