109 patient evaluations for Riluzole

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Aug 24, 2008 (Started Feb 20, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: We can never know if Rilutek does any of us any good. If it doesn't seem to be doing any harm, I believe it is better to take it than not to.
Cost: < $25 monthly

  • 2 helpful marks

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

Aug 19, 2008 (Started Oct 24, 2005)

  • 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

  • 1 helpful mark

Oct 20, 2008 (Started Feb 11, 2008)

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

  • 1 helpful mark

Jun 16, 2009 (Started Dec 20, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Sometimes
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: Stick to a consistent schedule for awakening, meal times and getting to bed.
Cost: $25-49 monthly

  • 1 helpful mark

Jul 18, 2009 (Started May 03, 2009)

  • 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: Don't think it's the "Silver Bullet"
Cost: $50-99 monthly
Side effects: abdominal pain, stomach pain, nausea

May 3, 2009 (Started May 03, 2009)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (nausea)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: Stay close to the bathroom
Cost: $50-99 monthly
Side effects: abdominal pain, stomach pain, nausea

  • 1 helpful mark

Aug 3, 2009 (Started Mar 10, 2009)

  • 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

  • 1 helpful mark

Nov 13, 2009 (Started Sep 19, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Cost: $50-99 monthly

Aug 10, 2009 (Started Sep 19, 2008)

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

May 23, 2009 (Started Sep 19, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Cost: $50-99 monthly

Feb 18, 2009 (Started Sep 19, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Cost: $50-99 monthly

Nov 20, 2008 (Started Sep 19, 2008)

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

  • 1 helpful mark

Nov 5, 2009 (Started Sep 05, 2000)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: HELPS WITH ALS

Jul 1, 2009 (Started Sep 05, 2000)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: survivor it is

Jan 16, 2009 (Started Sep 05, 2000)

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

  • 1 helpful mark

Jan 28, 2010 (Started Feb 11, 2007)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Oct 26, 2009 (Started Feb 11, 2007)

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

Aug 19, 2008 (Started Feb 11, 2007)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: MY DOCTOR SAYS MAKE SURE I TAKE IT SO I DO
Cost: < $25 monthly

  • 1 helpful mark
Last updated:
Showing 10 of 109 patient evaluations for Riluzole