109 patient evaluations for Riluzole

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

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

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

Oct 8, 2012 (Started Oct 03, 2012)

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

  • 0 helpful marks

Sep 28, 2012 (Started Mar 16, 2011)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (burning sensation in eyes)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Cost: $25-49 monthly

Apr 11, 2011 (Started Mar 16, 2011)

  • Effectiveness
    Major (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: It made my fasciculations become noticeably less severe.
Cost: $25-49 monthly

  • 0 helpful marks

Aug 10, 2012 (Started Oct 19, 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: it may have been effective, after all I am 40 months on since diagnosis. I have stopped taking it now that I am almost physically incapable. I don't relish the prospect of spending an extra three months in physical decrepitude.
Cost: < $25 monthly
Side effects: complete exhaustion

Apr 30, 2010 (Started Oct 19, 2009)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (complete exhaustion)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: initially I was dreadfully tired and I thought I experienced a bad taste in my mouth but both effects wore off. As to the benefits of the treatment, what can I say, it's difficult to know if it helps, I've not had MND before. However, my MND has slow progression. It should benoted that in the UK there is no cost implication in the decision to take riluzole as the medication is paid for by the National Health Service and costs the patient $10 a month.
Cost: < $25 monthly
Side effects: complete exhaustion

  • 0 helpful marks

Jul 28, 2012 (Started Jul 14, 2006)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (iron deficiency anemia)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily

  • 0 helpful marks

May 21, 2012 (Started Mar 16, 2012)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Severe (fatigue, symptoms worse when on Rilutek, disease progression increased, numbness in lips)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: side effects outway benefits. I've become extremely fatigued in the last 30 days, in addition I believe it may be making my symptoms worse. In addition, too expensive for the possible benefit of a 2 to 3 month extension of life.
Cost: $200+ monthly

May 15, 2012 (Started Mar 16, 2012)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Mild (fatigue, symptoms worse when on Rilutek, disease progression increased, numbness in lips)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Advice & Tips: In my opinion, the cost and possible side effects can out way the benefit. With my current insurance plan this drug will cost me $2,850 annually. But my dr insists I take it, and since my side effects are minimal, I will continue to take it.
Cost: $200+ monthly

  • 0 helpful marks

Apr 15, 2012 (Started Jan 24, 2011)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Cost: $25-49 monthly

Feb 4, 2011 (Started Jan 24, 2011)

  • 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: Scheduled to take 2 hours after last meal and one hour before. 11 am and 11 pm seems to be the perfect time for that. Set my phone to remind me.
Cost: $25-49 monthly

  • 0 helpful marks

Jan 15, 2012 (Started Dec 15, 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

  • 0 helpful marks

Jan 2, 2012 (Started Oct 14, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily

  • 0 helpful marks
Last updated:
Showing 10 of 109 patient evaluations for Riluzole