Newbie with Rilutek

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jethro

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356
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PALS
Diagnosis
09/2017
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HR
State
Croatia
City
ZAGREB
yes, you read it right!
its app 3,5 years after onset and 10 months after diagnose.
my ALSFRS-R is 39, neuro count in on 29.6.
he was angry with me after saying that i never used rilutek cause i didnt believed dx. all i got i have in my draw.
now is 18th day of using rilutek. after 15 days i checked my alt 84 and ast 58, ck 690, crp 2.2 and kreatinin 65, cholesterol 5.9 and triglicerids 3.4.
i dont use carbs, but mct oil.

um... ast and alt elevated, but not significant, but CK is wow!!! didnt visit gym for 45 days.
when liver enzimes can be stabile elevated? i know that they wont be in referent interval, but i hope they wont be three digits starting with more than 3...

intend to use ibudilast as a add on to rilutek.
i'll report results after one month as soon as i get ibudilast.

if i do not report results, dont use ibudilast :)

how it goes with alcohol? i'm 225 pounds. does it make problem 2 beers/week?
ibudilast is disolved in peg-400 (3ml alcohol/day, 2 x (30 [email protected],5ml peg400)

--
anybody read joe dispenza?
 

Firefighter58

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Jun 21, 2016
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PALS
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ON
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Jethro I use rilutec and drink beer in moderation and have to problem.
Al
 

KarenNWendyn

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3,751
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07/2017
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OR
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CPK can be elevated in ALS from muscle breakdown, even if you are not exercising. The ALT and AST are liver enzymes, but they can also be released from skeletal muscle when it breaks down.

So you most likely had elevated levels of CPK, ALT and AST before you even started Riluzole/ Rilutek.

My neurologist said we don’t worry about elevated AST and ALT on Riluzole unless they are at least 5 x upper limit of normal.

An occasional beer is probably ok as long as the liver enzymes don’t shoot way up.

My AST and ALT were always normal before ALS. After ALS and before I went on Riluzole, the AST and ALT went up. They went up a little more after I started the Riluzole, but the levels have bounced around. The neurologist isn’t worried about mine because they seem to be generally no more than 2 to 3 times the upper limit of normal.
 

KimT

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Jethro,

Have you tried Tudca? I had to stop because it upset my stomach but it's liver protective and body builders have been using it for years. It might offset any liver issues Riluzole causes.

Do you feel better or worse since starting Riluzole? I was prescribed it in 2015 but, after lots of consideration, decided not to take it and go with a Vitamin regimen instead. Of course, many are doing both with success at managing side effects and liver issues.
 

jethro

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Joined
Nov 2, 2017
Messages
356
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
City
ZAGREB
@kim, thanks for advice. didnt use tudca, now i'm almost 3 weeks on rilutek. no side effects at all. i'm little bit differet that way. i can eat airplane. to be honest, i never used any kind of drugs more than week (antibiotics).
cant say am i better or not, but i started to take it when i broke a point of endurance. i measure it in steps. now i'm on 500 at once (max).
today i bought ibudalist. delivery is in one- three weeks.
tomorrow ill buy niagen, mitoq and i noticed lack of q10 in my shelf.
stopped with carbs, but started with mct oil.
trying to reduce pills/day.
too much fillings.
i dont know if i am so far away from early stage of als, cause rilutek is most effective in early stage.
fact that i dont use AFO, wheelchair etc doesnt mean anything.
@karen, CK is constantly high, 650-850, crp is ok...
 
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