Rilutek

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chrisroski

Active member
Joined
Apr 12, 2012
Messages
93
Reason
PALS
Diagnosis
01/2012
Country
US
State
Pa
City
Philadelphia
Does anyone have problems with the medication Rilutek affecting their bowels? Have tried taking on empty stomach. Dr. suggested taking with food did not work and then told me to take 1/2 in am and 1/2 in pm with food, but still have loose bowels.
 
No....I don't have the loose bowels symptom. I take it on an empty stomach.
 
Does this Rilutek really help with anything?...
 
Thousands think it helps.

AL
 
No problems here, despite my initial worries that I had, and I've been on them since July 2011
 
Does this Rilutek really help with anything?...

I can't really say........I don't think that it's hurting anything though. I am taking it at the urging of my wife. The lady who leads our local support group thinks that it has been beneficial to the PALS that she has known over the years. Who knows
 
Supposedly it does no benefit if taken with food in the stomach. Directions are 1 hour before you eat or 2 hours after you eat, and every 12 hours. Pretty much impossible for a PALS to do that.
 
My husband had terrible headaches while on rilutek and he was progressing so fast that we figured we have nothing to lose by stopping it. Another PALS in our area also had bad side effects & very rapid progression & stopped it as well.
 
Either it causes side effects or you feel nothing. For those that have side effects it is best to just stop taking it. There are a large # of PALS who believe that this drug does ABSOLUTELY NOTHING, and is a big rip off. My husband takes it because we got it free through the VA. Once we run out, he will not be taking it anymore. (He doesn't have the VA coverage anymore)
 
We have our fingers crossed but my husband went on Rilutek the day he was diagnosed (Feb.7) and has had very little progression of his Bulbar Onset ALS. His speech is maybe a little worse but, he still eats a lot (is selective with food that is easy to chew and swallow), has gained a few pounds, and no limb involvement yet. He's active; golfs, mows the lawn, drives, and types a lot. The only side effect so far is fatigue. I pray everyday he continues with this very slow progression. Has anyone else experienced this at the beginning? I'd say he's had mild symptoms of ALS since April last year until his diagnosis in Feb. this year. Will he suddenly start losing his muscles or can it still continue slowly for a long time? I always read how Bulbar is faster, could he be lucky enough to last a long time or am I being premature in my hopes?
 
I take one between 9 and 11 in a morning just after a bowl of porridge and the other on an evening also between 9 and 11 but this one is without food
 
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