12 patient evaluations for Riluzole with a burden rating of Somewhat hard to take

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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

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

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

Mar 30, 2011 (Started Jan 10, 2009)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Severe (loss of interest in food)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: I feel much better since I stopped
Cost: $200+ monthly
Side effects: loss of interest in food

  • 0 helpful marks

Jan 11, 2011 (Started Nov 19, 2010)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (elevated liver enzymes)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: My adverse effect was elevated liver enzymes. I stopped the drug on my doctor's advice, and couldn't restart because I'm on the dex trial and no interruption in Riluzole treatment is allowed in that trial. I found it very challenging to follow the rules about eating and taking Riluzole, but my doctor told me after I stopped taking it that those rules didn't. matter
Cost: $200+ monthly

  • 0 helpful marks

Oct 5, 2010 (Started Mar 12, 2010)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Severe (tiredness)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 50 mg Daily
Cost: $25-49 monthly
Side effects: tiredness

Jun 30, 2010 (Started Mar 12, 2010)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Severe (tiredness)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: I made a decision that 10% increased lifespan from onset was not worth being very sleepy all the time. I would rather require far less sleep each day than live slightly longer. I am typing this about 10 days after stopping and have enjoyed being far less tired. I wasn't sure if tiredness was a symptom of ALS or side effect of Rilutek. I have now confirmed it was a side effect of Rilutek.
Cost: $25-49 monthly
Side effects: tiredness

Apr 12, 2010 (Started Mar 12, 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: $25-49 monthly
Side effects: tiredness

  • 0 helpful marks

Jul 13, 2010 (Started Apr 28, 2010)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: We think it was causing diarrea. My Neurologist said we would stop it for a whilw and see if it helps.

  • 0 helpful marks

Jun 15, 2010 (Started Apr 23, 2010)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (generalized weakness (asthenia), nausea, loss of sense of taste)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: Side effects, weakness, lack of energy and strength, taste loss, slight nausea, weight loss, cannot eat 6 hours out of the day. The side effects were not worth the small possible benefit.
Cost: $200+ monthly
Side effects: generalized weakness (asthenia), loss of sense of taste, nausea

  • 0 helpful marks

May 7, 2010 (Started Jan 09, 2010)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (nausea and vomiting)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: The side effects for the first two months were pretty bad.I had trouble keeping any food down in the mornings and I got really dizzy at times. then the side effects eased off about 85% and I am doing better.
Cost: $25-49 monthly
Side effects: nausea and vomiting

  • 0 helpful marks

Mar 20, 2010 (Started Dec 14, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (difficulty staying asleep)
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Side effects: difficulty staying asleep

  • 0 helpful marks
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