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Riluzole Treatment Report

Category: Prescription Drugs

Most Popular Types: Rilutek

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Generic Name: Riluzole

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94 patient evaluations for Riluzole

Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Aug 27, 2010)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Dec 20, 2011 100 mg Daily ?Can't tell MildMildMildMildMild AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
Dec 20, 2011
Advice & Tips
I stopped with Rilutek because I want to be fitter for the time I have left. I am now using vitamine D and feeling better than with Rilutek. Rilutek just is not the thing for me, why living 3 months longer at the end when your a wreck?
Cost
< $25 monthly
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Jul 01, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Nov 09, 2011 100 mg Daily Led_efficacy_3Led_efficacy_3Led_efficacy_3Led_defaultModerate ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Sep 10, 2010)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Oct 31, 2011 100 mg Daily ?Can't tell ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
Oct 31, 2011
Advice & Tips
I took this medication for a year because the doctors handed it to me right after my diagnosis. Instead of doing this, I recommend a self-trial to see how tired this stuff makes you.
Cost
< $25 monthly
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Aug 01, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Oct 19, 2011 100 mcg Daily ?Can't tell ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Dec 20, 2010)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Sep 26, 2011 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Date
Sep 26, 2011
Advice & Tips
I'm not sure if I will ever know whether riluzole is helping me or not. I can say the only reason I'm taking it is because it is covered by my insurance. It is my understanding that it would cost $14,000 per year if I had to pay full price. I'm not certain that the promised "1 to 3 months"survival time would seem worth that cost.
Cost
< $25 monthly
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Jun 15, 2008)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Sep 14, 2011 100 mg Daily ?Can't tell NoneNoneNoneNoneNone SometimesSometimesSometimesSometimesSometimes VeryVeryVeryVeryVery
Feb 11, 2011 100 mg Daily ?Can't tell NoneNoneNoneNoneNone SometimesSometimesSometimesSometimesSometimes VeryVeryVeryVeryVery
Dec 20, 2010 100 mg Daily ?Can't tell NoneNoneNoneNoneNone NeverNeverNeverNeverNever VeryVeryVeryVeryVery
Nov 09, 2009 100 mg Daily ?Can't tell NoneNoneNoneNoneNone SometimesSometimesSometimesSometimesSometimes VeryVeryVeryVeryVery
Nov 17, 2008 100 mg Daily ?Can't tell NoneNoneNoneNoneNone UsuallyUsuallyUsuallyUsuallyUsually Not at allNot at allNot at allNot at allNot at all
Date
Dec 20, 2010
Advice & Tips
I take with other pills-- just too busy to take as presribed
Cost
< $25 monthly
Date
Nov 17, 2008
Advice & Tips
I have a really hard time being able to take the evening dose at a time when I haven't eaten in 2 hr or don't need to take other medicine within the next hour. many times I take both Li and this at same time -- right before bedtime
Cost
< $25 monthly
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Oct 18, 2001)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Aug 13, 2011 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Nov 17, 2010 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started May 27, 2011)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jul 05, 2011 100 mg Daily Led_efficacy_1Led_defaultLed_defaultLed_defaultNone ModerateModerateModerateModerateModerate AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
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  • Ziz
    Sex: M
    Data Quality: 3 stars
    ALS: 6 yrs
    Ventilator Wheelchair Feeding tube
    Bulbar: severe
    Arms: severe
    Chest: severe
    Legs: severe
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Purpose: PMA (Progressive Muscular Atrophy) (Started Nov 13, 2008)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jun 29, 2011 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways A littleA littleA littleA littleA little
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Purpose: ALS (Amyotrophic Lateral Sclerosis) (Started Apr 05, 2010)
Date Dosage Perceived effectiveness Side Effects Adherence Burden
Jun 17, 2011 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Dec 22, 2010 100 mg Daily Led_efficacy_2Led_efficacy_2Led_defaultLed_defaultSlight NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways Not at allNot at allNot at allNot at allNot at all
Sep 19, 2010 100 mg Daily ?Can't tell NoneNoneNoneNoneNone AlwaysAlwaysAlwaysAlwaysAlways SomewhatSomewhatSomewhatSomewhatSomewhat
Date
Dec 22, 2010
Advice & Tips
Rilutek is expensive but I am currently on a Patient Assistance Program sponsored by the manufacturer that offers the medication at no charge. I do believe that it has slowed the progression to some degree. Information about this program can be found by contacting Sanofi Aventis directly or through NORD, the National Organization for Rare Disorders.
Cost
$200+ monthly
Date
Sep 19, 2010
Advice & Tips
It is expensive if you do not have insurance, and some insurance policies do not cover it. However there is some help from the manufacturer through a program called the Rilutek continuity program. You can contact him directly at 1-800-745-8835. Cost listed below is without this program.
Cost
$200+ monthly
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