Rilutek and nausea a month later?

Status
Not open for further replies.

glupavomomiche

Distinguished member
Joined
Sep 25, 2011
Messages
282
Reason
PALS
Diagnosis
09/2011
Country
US
State
Texas
City
Podunk
Dear ALS Elders (so named by me as I am still a newbie to our common malady),

I searched the old threads about this, but didn't really find the answer, and I'm desperate enough for an answer to pose this question (especially since there is not a doctor to be found in an office until next Tuesday! Haven't these people ever heard of having someone on-call?).

I've been on Rilutek 33 days now. The last 5 days I have been incessantly nauseated. It does not let up for anything. I can eat through it (sort-of), and no problems with upchucking or the Hershey squirts, so I really don't think it's a stomach virus.

So can Rilutek cause this after taking it for a month? Or am I barking up the wrong tree?

And if you have ever anything experienced this, did you find a method of treating it that actually worked? I've got some anti-nausea chewables that aren't doing a darn thing, some Sprite, Gatorade, and Saltines, and running out of ideas fast.

Thanks and Happy Hanukkah!

~ Sarah
 
Sarah,
SIDE EFFECTS:
Dizziness, lightheadedness, drowsiness, tiredness, nausea, vomiting, diarrhea, loss of appetite, stomach pain, or numbness/tingling around the mouth may occur. Any sign of jaundice...stop immediately and go to your Doc.
If this continues I'd suggest stopping the med temporarily until you can reach your physician. I was only on it for 7 weeks when my liver enzymes became elevated and had to stop it. They've since returned to WNL.
 
Thanks, Deb. I did read all that stuff before. But it's not specific if these side effects should happen immediately or can start later... that's really my question. And as for stopping it... no way, not just for nausea. I cling to that little pill like a lifeline 'cause that's all we get. If that's what's causing this, so be it, I can deal with it if I have to... just trying to figure out if it's really the problem or more likely something else that I should be taking care of.
 
Id say talk with the Doc when he decides to return from Holiday. The drug has had time to build up in your system and you may need your liver checked.
 
My opinion is you should stop taking the Rilutek until you can talk with your doctor. As Liz says, it may be affecting your liver and that is one of the reasons many people stop taking it. Honestly, even though it is the only FDA approved treatment, Rilutek is just not very effective against ALS. I wouldn't put up with the nausea for such little benefit from this drug.

-Tom
 
I understand where you're coming from in that it's all we've got. If it gets any worse or you add vomiting, stomach pain, and or diarrhea to the mix I would take a break from it until you can reach your physician. If it's not the drug causing it, you can always start it back.

As my Doc says, "You can live with ALS, but you can't live without your liver."

When are you due to have the liver function checked? I was lucky that mine was caught early because I have blood work every 4 weeks as a participant in the Ceftriaxone Trial.

Hope you're feeling better for the weekend.
 
And that brings up the crazy issue. When I saw the neuro on Tuesday, he was, let's say, VERY distracted by the holiday insanity and the constant stream of interruptions during my visits. He said we'd check my liver stuff at 6 mos?!?!?!?!?!?! My mom and I were not thrilled by that, so she let my PCP know (she works for him) and hopefully he'll run the needed tests before I see him next month. The only thing I got out of the neuro this time was an order for a sleep study and no refill on the muscle relaxer (it was replaced with a suggestion to drink tonic water and eat more bananas). Needless to say... was not a good visit.

The good news... Nausea better today with some peppermint nausea stuff, so hoping it's going to go away soon! But thank you all for the advice! I appreciate your input! :)
 
Status
Not open for further replies.
Back
Top