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ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
I just got a call from Hershey, well actually the wife answered. I was hoping they were gonna tell me, "Sorry big mistake, you've got gas not ALS". Well that didn't work out. Anyway they told the wife to tell me to stop taking the Rilutek because my liver enzymes were slightly elevated. She didn't get which ones or what exactly "slightly" means. I'm going to try and get what was high and the levels in a bit. For now they're telling me to stop taking the Rilutek and go get another liver function test in a couple weeks.

My question is this: Has anyone else been taken off of Rilutek because of elevated liver enzymes? If so how long were you off? Did you start taking it again? You know all the normal give me your life story kind of stuff :)
 

gramps

New member
Joined
Jan 14, 2007
Messages
7
Reason
PALS
Diagnosis
1/2007
Country
US
State
Texas
City
central
Liver enzymes

Zen,
I hoped that, by now, you have received the results of your follow-up lab work, and the liver is now okay. I will attempt to answer you questions, since no one has replied.

The elelvated enzymes indicate that SOMETHING is damaging your liver & its ability to remove toxins from your body. This could be the Rilutek, other prescription meds, alcohol consumption, or even acetominophen. It is best to do as your physician directed (stop Rilutek & repeat the blood test), and then work with your doctor to determine the cause of the enzyme elevation. It can take a bit of detective work to determine the actual cause(s), so I would not allow the doctor to automatically blame the Rilutek.

Good luck with finding the culprit!
gramps
 

JustMe

Active member
Joined
Dec 29, 2006
Messages
35
Reason
PALS
Country
US
State
Pennsylvania
City
Harrisburg
liver enzymes elevated ? ? ?

Hi Jeff / ZenArcher:

This has been my bigest problem dealing with Hershey - that it is very difficult to get specific and detailed information from them. Hang in there and don't let them stall you off without a good answer - meaning Yes or No, not Maybe.

I have been on Rilutek for 2 1/2 years now and liver tests are always normal, but who knows. We are all different and individual.

BTW - thanks for that link- it is really shocking to see how differently people in other states / parts of the country are treated. This (Pennsylvania) is NOT a good place to be living if you have a serious disease the attitude is pretty much YOYO - You're On Your Own !

Later - - - Roy / JustMe
 
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yarp

New member
Joined
Jun 1, 2009
Messages
1
Reason
Other
Country
RO
State
bihor
City
oradea
elevated liver enzymes

Hiya,

Do you have any additional information about elevated liver enzymes - symptoms, medical conditions, etc. Anything basic on elevated liver enzymes.
 

acenoface

Member
Joined
May 27, 2009
Messages
12
Reason
PALS
Diagnosis
02/2005
Country
US
State
mi
City
east lansing
when I got a report of slightly elevated liver enzymes, my neurologist told me to step taking the stimulants that my psychiatrist prescribed to me for alertness. When I did that, my liver enzymes didn't change, so I went back on the stimulant. Eventually, the levels decreased to a normal level by themselves. Don't get freaked out about slightly elevated liver enzymes levels.
 

reggy

New member
Joined
Apr 27, 2010
Messages
1
Reason
Other
Country
RO
State
n/a
City
n/a
I just got a call from Hershey, well actually the wife answered. I was hoping they were gonna tell me, "Sorry big mistake, you've got gas not ALS". Well that didn't work out. Anyway they told the wife to tell me to stop taking the Rilutek because my liver enzymes were slightly elevated. She didn't get which ones or what exactly "slightly" means. I'm going to try and get what was high and the levels in a bit. For now they're telling me to stop taking the Rilutek and go get another liver function test in a couple weeks.

My question is this: Has anyone else been taken off of Rilutek because of elevated liver enzymes? If so how long were you off? Did you start taking it again? You know all the normal give me your life story kind of stuff :)
Have any other members or their relatives had elevated liver enzymes?
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
Have any other members or their relatives had elevated liver enzymes?

Why do you ask? There are many conditions that can cause elevated liver enzymes, and the vast majority of them have nothing to do with ALS, either for the PALS or any of his/her relatives.
 

halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
When I started taking Rilutek, the doctor told me to go in every month for a blood test of liver function. So I guess it is a known side effect of the drug. Now after 8 months with no problems, he says I can space it out to every 6 weeks. Which reminds me, I need to go get it done.
 

Leemyers

New member
Joined
Apr 29, 2010
Messages
1
Diagnosis
05/2009
Country
US
State
Rhode Island
City
Pawtucket
I've just left my cousin who is also taking medication Rilutuck. I've noticed over past couple of Weeks he looks jaudice. Now that you have mentioned elevated liver enzymes, I will get him some blood work ordered. Thanks for the insight.
 
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