14 patient evaluations for Riluzole with a cost of $200+

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Aug 18, 2013 (Started Aug 10, 2011)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Very hard to take
Dosage: 100 mg Daily
Cost: $200+ monthly

  • 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 29, 2011 (Started Jun 29, 2010)

  • Effectiveness
    Moderate (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: I think this extended my time by at least six months. I started taking it about two months after my diagnosis. I've been told it's more effective when you start taking it early like I did. The drawback is the expense. I started it while I was still working and had very good health insurance. I also had a card from the manufacturer that the ALS clinic gave me for $100/month off for a year. Even with all that I still had to pay $400/mo out of pocket! Now I'm on medicare with blue cross med advantage and now pay $500/mo. They tell me it's $1100 before insurance. I have to admit it's been worth it though. I saw a definite slow down in the progression of the disease.
Cost: $200+ monthly

  • 0 helpful marks

Apr 25, 2011 (Started May 07, 2010)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: Daily
Cost: $200+ 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

Nov 12, 2010 (Started Jul 14, 2010)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: $200+ monthly

Sep 2, 2010 (Started Jul 14, 2010)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: 100 mg Daily
Advice & Tips: The directions say to take 12 hours apart and either 1 hour before or 2 hours after eating. This is easy in the morning because my husband brings the pill and some water to me at 6:00 a.m., and I don't get up until after 8 a.m. usually. It's harder to schedule my meals in the evening, however, so I take it again at 5:00 p.m. if I'm already hungry then, or at 6:00 p.m., but sometimes I've eaten just before or after taking the evening dose. I don't know if this really matters or not.
Cost: $200+ monthly

  • 0 helpful marks

Oct 12, 2010 (Started Jun 08, 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: $200+ monthly

  • 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

Jul 28, 2010 (Started Apr 09, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Cost: $200+ monthly

May 30, 2010 (Started Apr 09, 2008)

  • Effectiveness
    Can't tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Cost: $200+ monthly

  • 0 helpful marks
Last updated:
Showing 10 of 14 patient evaluations for Riluzole