Rilutek

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Lisa Lane

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Joined
Jul 25, 2006
Messages
21
Reason
PALS
Country
US
State
GA
City
Buford
I have decided to start Rilutek. Do most PALS take it? If so have you had complications, or have you noticed a difference? I would love any input on this drug.
 

lunarruna

Distinguished member
Joined
May 20, 2006
Messages
145
Reason
CALS
Country
US
State
xx
City
xxxx
Hi Lisa...
If you use the 'search' function at the top of this forum website and type in Rilutek, you can get in on a lot of past discussion on who takes/took Rilutek and other details.
My husband PALS declined it, didnt feel it would be worth it, but everyone has different attitudes about it and many, many PALS take it.
Good Luck, Beth
 

ruby ben

Active member
Joined
Jan 17, 2006
Messages
82
Reason
PALS
Diagnosis
11/2010
Country
CA
State
B. C.
City
Vancouver (Surrey)
Hi - I have been taking Rilutek for about 6 weeks now. I have no side effects. I do not notice any change and did not expect to. They say it is like taking a baby aspirin for your heart - you do not notice any change and who knows for sure if it is doing any good. As long as it does not start to affect my liver, any thing is worth a try.................ruby from vancouver (surrey)
 

Boots

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Aug 15, 2006
Messages
18
Country
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State
Missouri
City
Centerview
Lisa, my hubby has been taking rilutek for about 12 weeks now with no apparent side affects or complications. We were told up front that he wouldn't feel any different, but that it could slow down the progression. We didn't feel he had anything to lose. Good luck. Boots
 

Lisa Lane

Member
Joined
Jul 25, 2006
Messages
21
Reason
PALS
Country
US
State
GA
City
Buford
Thanks everyone for the advice. I am going to start next week.
 

LeoGreene

Active member
Joined
Aug 11, 2006
Messages
47
Reason
PALS
Country
US
State
California
City
Pomona
I've had it sitting in my medicine cabinet for several days and haven't started it. My pharmicist read me the long list of possible side effects and I think it scared me. About 14 percent of those who try it can't tolerate it.
I think I'll start it tonight.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Well realistically if you read the side effects of Tylenol you wouldn't go near it either.
 

Blackbird_29

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Joined
Aug 25, 2006
Messages
7
Reason
PALS
Country
NZ
State
Wellington
City
Wellington
Hi,
I have been on Rilutek for nearly a year and started shortly after diagnosis. I can just hope that I am better than I might have been without it. Have to live with hope! Its very expensive here but I am telling myself it is worth it. I want to live for a long time!
I have regular blood tests for side affects but all is ok.

Merle (kiwi from New Zealand):-D
 

buddyr

New member
Joined
Aug 13, 2006
Messages
6
Reason
PALS
Country
US
State
virginia
City
swoope
lisa....first neurologist stressed side effects....2nd opinion neur. at teaching hosp with only als clinic in state said 60% of diagn. patients took it with few little/minor side effects reported....of course with liver monitoring monthly until taken for some time.....a coordinator at state als organiz says she has worked with 300 + diagnosed patients - almost all taking it...with only 3 having side effects....she also said that immediately upon stopping it, the side effects stopped (no lengthly lingering effects)..... i was diag in july....have not made a decision on rilutek....holding off until i make decisions about possible participation in drug trials, ...my inclination at the moment is to take it....this note is my first reply to a thread....good luck....buddyr
 
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Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Thanks for the input buddy. Welcome to the forum. AL.
 

acv

New member
Joined
Aug 20, 2006
Messages
5
Reason
Loved one DX
Country
CA
State
on
City
sudbury
Hi - finally decided to participate in site - Thanks to all who post - you've helped myself, my Mom (who has ALS) and my family greatly. Mom took Rilutek for almost 3 months early 2006, but developed jaundice and terminated the treatment. Did it help her ALS? who knows, but it seemed worth trying. Her blood work's back to normal now. Like taking any other drug, keep on top of any negative reaction.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome acv and thanks for the input. Good or bad it is good to know how people are doing with their treatments. AL.
 
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