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BlueEyesOhio7

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Reason
PALS
Diagnosis
06/2014
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US
State
Ohio
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I have been on Rulizole for about 10 days. My sense of taste has been affected. Things don't taste like they used to. I have other mild side effects like slight nausea and headache which I am sure will disappear as the days go on. I am wondering if the taste being affected is a side effect and will go away or if that is a permanent fixture of the drug?

I am wondering, and my hubby and I have discussed the benefits of continuing to use it. I am thinking there is no way of knowing if it is working.

I am putting this out there just for the sake of discussion and to help with my decision process. I am hoping the discussion will help others as well.

Today is 3 weeks since diagnosis. What a ride! This is a VERY confusing process! My priority is working through the process with a good attitude and being courageous. Yesterday I was NOT courageous! I felt like a quivering mass of jello!

Lynne
 
Lynne, whether to take it or not really is a personal decision, some think it's worth it others do not. For myself, I decided that a few extra months of suffering was not worth it. I'm not afraid of the going, just the getting to that point
 
I'm taking it -- no side effects I know of. there was another recent thread on this. Dalvin, do you remember where?
 
Can't remember where the thread was. Have seen several posts though
 
I have been on it for over a year, everything does taste sour for the first bite or two (embarrassing when someone brings me food and I act as if I took a bite of lemon) I did not know that it effected taste buds until I read it somewhere here.I take so many pills that I don't always read the side effects until I feel them .Janie
 
How much do you take per day?
 
50mg every 12 hours, I think everybody takes this amount. I read taking more does not help.
Janie
 
Thanks Janie. I looked at it on my pharmacy website and I can get a 180 tabs for $90 is I take the generic. Brand name is $2,800 for 90 days.
 
I have no side effects that I can attribute to Riluzole. There is a long list (here) but I do not see 'taste' on it. (dang near everything else, tho)

Are you sure it's the riluzole?
 
Is riluzole the only drug you were prescribed? I've got an 8drug regimen. Don't know which drug causes which side effect?
 
I have been on Rulizole for about 10 days. My sense of taste has been affected.

It's strange that a few people have made this comment. I've always said that I had no side effects from the drug........but maybe I do. I can say for sure that my sense of taste has changed. Sweet items just don't taste good to me anymore. I've given up cakes, cookies, candy, chocolate, etc. because they just don't excite me anymore. These items used to be daily staples for me.

I do attribute my slower progression to the Riluzole..........but I can't prove it.
 
My PALS tried Riluzole/Rilutek for a short while but gave it up because it made her feel sick to her stomach.
 
You can get riluzole coupons good at certain pharmacies that will be much cheaper than $90. Look for them.
 
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