36 patient evaluations for Riluzole with a cost of < $25

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

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

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

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

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

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

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

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

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

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
Last updated:
Showing 10 of 36 patient evaluations for Riluzole