Filter by patients with: All

109 patient evaluations for Riluzole

817 members have decided to share their profiles only with other members of PatientsLikeMe.

Sort by: Most recent

Jan 5, 2019 (Started Aug 07, 2018)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Advice & Tips: It controls my mood.I don't cry every day any more.
Cost: < $25 monthly

Aug 7, 2018 (Started Aug 07, 2018)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Advice & Tips: I don't notice any difference with this drug
Cost: < $25 monthly
  • 0 helpful marks

Feb 15, 2018 (Started Dec 15, 2017)

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

Jan 15, 2018 (Started Jan 01, 2002)

  • Effectiveness
    Slight (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: It is impossible to evaluate the effectiveness for oneself. However, statistical studies do show it extends life expectancy. I would start ASAP after diagnosis.
Cost: < $25 monthly
  • 0 helpful marks

Mar 26, 2017 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jan 28, 2017 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jan 12, 2017 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Dec 14, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Nov 30, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Oct 17, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Sep 28, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Sep 19, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Sep 6, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Aug 16, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Aug 5, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jul 22, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jul 7, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

May 31, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

May 12, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

May 3, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Apr 26, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Apr 18, 2016 (Started May 15, 2014)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly
  • 1 helpful mark

Mar 12, 2017 (Started May 06, 2004)

  • Effectiveness
    Moderate (for progressive muscular atrophy)
  • Side effects
    Mild (skin irritation, flaky skin on face and head)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: skin irritation, flaky skin on face and head

Jun 10, 2016 (Started May 06, 2004)

  • Effectiveness
    Moderate (for progressive muscular atrophy)
  • Side effects
    Mild (skin irritation, flaky skin on face and head)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: skin irritation, flaky skin on face and head

Apr 3, 2013 (Started May 06, 2004)

  • Effectiveness
    Major (for progressive muscular atrophy)
  • Side effects
    Moderate (skin irritation, flaky skin on face and head)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: skin irritation, flaky skin on face and head

Sep 3, 2010 (Started May 06, 2004)

  • Effectiveness
    Moderate (for progressive muscular atrophy)
  • Side effects
    Moderate (skin irritation, flaky skin on face and head)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: itchiness all over,flaking of skin off face/head- wash hair every day,use DermaVeen shower wash/moisturising lotion daily.
Side effects: skin irritation, flaky skin on face and head

Sep 15, 2008 (Started May 06, 2004)

  • Effectiveness
    Slight (for progressive muscular atrophy)
  • Side effects
    Mild (skin irritation, flaky skin on face and head)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: skin irritation, flaky skin on face and head
  • 1 helpful mark

Dec 9, 2016 (Started Mar 15, 2016)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: Hard to judge how effective this is because the disease doesn't progress at a steady rate

Nov 21, 2016 (Started Mar 15, 2016)

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

Nov 14, 2016 (Started Mar 15, 2016)

  • Effectiveness
    Slight (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
  • 0 helpful marks

Dec 2, 2016 (Started Oct 01, 2016)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 50 mg Twice daily
  • 0 helpful marks

Nov 30, 2016 (Started May 15, 2016)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 50 mg Twice daily
Advice & Tips: I believe by taking this medicine and being compliant with the restrictions (1 hour after, 2 hours before, every 12 hrs) I'm doing everything I can to push off some of the damage. But I started right after diagnosis, so not sure of the effects.
Cost: < $25 monthly
  • 1 helpful mark

Oct 25, 2016 (Started Sep 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
Advice & Tips: stopped now that I can no longer eat, drink, or breathe without a ventilator
Cost: < $25 monthly

Oct 23, 2016 (Started Sep 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: 50 mg Twice daily
Cost: < $25 monthly

Oct 14, 2015 (Started Sep 15, 2013)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: I don't think it's doing anything.
Cost: < $25 monthly

Feb 8, 2015 (Started Sep 15, 2013)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: < $25 monthly
  • 0 helpful marks

Oct 6, 2016 (Started Oct 11, 2010)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Stopped taking because the VA stopped sending it to us. Also after 4 years of taking did not see any results.

Jul 1, 2015 (Started Oct 11, 2010)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: Did not see any changes from taking this drug.
  • 0 helpful marks
Last updated:
Showing 10 of 109 patient evaluations for Riluzole