108 patient evaluations for Riluzole

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Gudjon
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Gudjon
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: mild
Chest: mild
Legs: moderate
I am: vg
I have:
PLS

See Gudjon's full Riluzole history

May 5, 2016 (Started May 15, 2004)

  • Effectiveness
    Can’t tell (for primary lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Apr 9, 2009 (Started May 15, 2004)

  • Effectiveness
    Can’t tell (for primary lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: We should all ask them for better drug. Sins they are alone, nothing new is coming from them.
Cost: < $25 monthly

  • 0 helpful marks
Jodialeszka
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Jodialeszka
Sex: M
Data Quality: 1 star
Bulbar: mild
Arms: mild
Chest: mild
Legs: moderate
I am: g
I have:
ALS

See Jodialeszka's full Riluzole history

Feb 15, 2016 (Started Jan 14, 2016)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    Severe (Sexual impotence)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: I started taking this medication at the same time as nuedextaI. i don't know which one caused my inability to ejaculate but I wasn't willing to take the medication as long as I had to have this side effect. I was not willing to forgo my sex life, which I still enjoy, to "possibly give me 3 -6 months"
Cost: < $25 monthly

  • 0 helpful marks
Janshar
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Janshar
Sex: F
Data Quality: 1 star
Bulbar: moderate
Arms: severe
Chest: mild
Legs: severe
I have:
ALS

See Janshar's full Riluzole history

Feb 15, 2016 (Started Oct 10, 2010)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (Dry skin)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily

  • 0 helpful marks
GrannyR
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GrannyR
Sex: F
Data Quality: 1 star
Bulbar: severe
Arms: moderate
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See GrannyR's full Riluzole history

Oct 12, 2015 (Started May 09, 1995)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily

  • 0 helpful marks
canmark
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canmark
Sex: M
Data Quality: 2 stars
Bulbar: none
Arms: severe
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See canmark's full Riluzole history

Oct 10, 2015 (Started Jul 15, 2013)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Never taken as prescribed
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Nov 1, 2013 (Started Jul 15, 2013)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
acarbajal945
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acarbajal945
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: moderate
Chest: none
Legs: none
I am: g
I have:
ALS

See acarbajal945's full Riluzole history

Mar 7, 2014 (Started Mar 07, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
wrgguts
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wrgguts
Sex: M
Data Quality: 2 stars
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe
I am: vg
I have:
ALS

See wrgguts's full Riluzole history

Aug 18, 2013 (Started Aug 10, 2011)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Very hard to take
Dosage: 100 mg Daily
Cost: $200+ monthly

  • 0 helpful marks
MStone
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MStone
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: mild
Chest: mild
Legs: moderate
I am: g
I have:
ALS

See MStone's full Riluzole history

Mar 29, 2013 (Started May 15, 2012)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: 2 tablet(s) Daily
Advice & Tips: Ideally you're meant to take: - twice daily, exactly 12 hrs apart - after a 2 hr fast, and followed by a 1 hr fast. After lots of experimentation, I take at 6am & 6pm. Morning is easy, evening is harder to ensure both that I fast properly & that I remember to take. I set a reminder to eat at around 3:45pm, so that I can eat something before my fast from 4pm to 7pm.
Cost: < $25 monthly

  • 0 helpful marks
nacona
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nacona
Sex: M
Data Quality: 3 stars
Bulbar: mild
Arms: severe
Chest: none
Legs: moderate
I am: n
I have:
ALS

See nacona's full Riluzole history

Jan 15, 2013 (Started Apr 05, 2010)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: After the criteria for acceptance into the patient assistance program changed and after discussing it with my neurologist we determined that the cost far outweighed the benefits.
Cost: < $25 monthly

Jun 17, 2011 (Started Apr 05, 2010)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Dec 22, 2010 (Started Apr 05, 2010)

  • Effectiveness
    Slight (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
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

Sep 19, 2010 (Started Apr 05, 2010)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
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

  • 2 helpful marks
Wayne Lampe
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Wayne Lampe
Sex: M
Data Quality: 2 stars
Bulbar: moderate
Arms: severe
Chest: mild
Legs: moderate
I am: vg
I have:
ALS

See Wayne Lampe's full Riluzole history

Dec 15, 2012 (Started May 01, 2006)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    Mild
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Jan 1, 2012 (Started May 01, 2006)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Oct 28, 2009 (Started May 01, 2006)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Apr 4, 2009 (Started May 01, 2006)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Jan 27, 2009 (Started May 01, 2006)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Aug 23, 2008 (Started May 01, 2006)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

  • 0 helpful marks
Last updated:
Showing 10 of 108 patient evaluations for Riluzole