17 patient evaluations for Riluzole with a burden rating of A little hard to take

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

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

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

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

Oct 19, 2011 (Started Aug 01, 2011)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (fatigue)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mcg Daily
Cost: < $25 monthly

  • 0 helpful marks

Jun 29, 2011 (Started Nov 13, 2008)

  • Effectiveness
    Can't tell (for progressive muscular atrophy)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily

  • 0 helpful marks

May 25, 2011 (Started May 03, 2009)

  • 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: It is a slight pain because you're not supposed to eat for two hours before or an hour after, and I'm trying to keep weight on and don't have much of an appetite anyway, meaning taking 6 more hours out of the day when I can't eat on top of the others when I don't care to may not be helpful. But otherwise I don't notice it.
Cost: < $25 monthly

  • 1 helpful mark

Dec 11, 2010 (Started Feb 05, 2009)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Mild
  • Adherence
    Never taken as prescribed
  • Burden
    A little hard to take
Dosage: 50 mg Daily

  • 0 helpful marks

Oct 15, 2010 (Started Jun 01, 2009)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Mild
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 50 mg Daily

  • 0 helpful marks

Sep 3, 2010 (Started Sep 20, 2006)

  • Effectiveness
    Can't tell (for fatigue)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: Taken once in the morning and once at bedtime, about 12 hours apart. Unsure of effectiveness but disease has progressed slower than originally anticipated. I have been taking Rilutek since October of 2006. Currently purchasing under Medicare as a tier 4 drug. When in the doughnut hole the cost is approximately $985 per month.
Cost: $200+ monthly

  • 0 helpful marks

Aug 19, 2010 (Started Aug 17, 2009)

  • 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: It is difficult to find a slot of time, two times a day, to take this medication without food.
Cost: < $25 monthly

  • 0 helpful marks
Last updated:
Showing 10 of 17 patient evaluations for Riluzole