103 patient evaluations for Riluzole

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speechlessinseattle
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speechlessinseattle
Sex: F
Data Quality: 3 stars
Bulbar: mild
Arms: none
Chest: none
Legs: moderate
I am: g
I have:
PLS

See speechlessinseattle's full Riluzole history

Jun 27, 2013 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Feb 29, 2012 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Moderate (Sensation in tongue, Weakness in lips, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips, Dizziness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Advice & Tips: iT CAUSES ME TO HAVE EXTREME DIZZINESS
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Sep 17, 2011 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Daily
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Sep 2, 2010 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Mild (Sensation in tongue, Weakness in lips, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips, Dizziness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: every 12 hrs on an empty stomach is difficult. I think it has slowed down my progression but I cannot be certain.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Aug 25, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Severe (Sensation in tongue, Weakness in lips, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: Make sure to get the liver enzyme tests done regularly.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Aug 11, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: If you can afford it, take it. What can it hurt.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Jun 6, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Mild (Sensation in tongue, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: $200+ monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

Jun 1, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Moderate (Sensation in tongue, Skin irritation, Lightheadedness, Numbness in tongue, Numbness in lips)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: take it as directed by your doctor.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

May 31, 2009 (Started May 13, 2009)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Mild (Sensation in tongue, Skin irritation)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily
Advice & Tips: unsure as of yet.
Cost: < $25 monthly
Side effects: Numbness in tongue, Skin irritation, Sensation in tongue, Numbness in lips, Dizziness, Lightheadedness, Weakness in lips

  • 1 helpful mark
MStone
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MStone
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: mild
Chest: mild
Legs: moderate
I am: g
I have:
ALS

See MStone's full Riluzole history

Mar 29, 2013 (Started May 15, 2012)

  • Effectiveness
    Can’t tell (for ALS (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
nacona
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nacona
Sex: M
Data Quality: 3 stars
Bulbar: mild
Arms: severe
Chest: none
Legs: moderate
I am: n
I have:
ALS

See nacona's full Riluzole history

Jan 15, 2013 (Started Apr 05, 2010)

  • Effectiveness
    Can’t tell (for ALS (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 ALS (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 ALS (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 ALS (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
Wayne Lampe
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Wayne Lampe
Sex: M
Data Quality: 2 stars
Bulbar: moderate
Arms: severe
Chest: mild
Legs: moderate
I am: vg
I have:
ALS

See Wayne Lampe's full Riluzole history

Dec 15, 2012 (Started May 01, 2006)

  • Effectiveness
    Can’t tell (for ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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
TinaLuvsLife
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TinaLuvsLife
Sex: F
Data Quality: 3 stars
Bulbar: moderate
Arms: severe
Chest: moderate
Legs: severe
I am: vg
I have:
ALS

See TinaLuvsLife's full Riluzole history

Oct 8, 2012 (Started Oct 03, 2012)

  • Effectiveness
    None (for ALS (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
jaws-als
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jaws-als
Sex: M
Data Quality: 1 star
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe
I am: vg
I have:
ALS

See jaws-als's full Riluzole history

Sep 28, 2012 (Started Mar 16, 2011)

  • Effectiveness
    None (for ALS (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 ALS (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
Tommy Maker
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Tommy Maker
Sex: M
Data Quality: 2 stars
Bulbar: mild
Arms: severe
Chest: moderate
Legs: severe
I am: vb
I have:
ALS

See Tommy Maker's full Riluzole history

Aug 10, 2012 (Started Oct 19, 2009)

  • Effectiveness
    Can’t tell (for ALS (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 ALS (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
Rachael
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Rachael
Sex: F
Data Quality: 1 star
Bulbar: severe
Arms: severe
Chest: moderate
Legs: severe
I am: vb
I have:
ALS

See Rachael's full Riluzole history

Jul 28, 2012 (Started Jul 14, 2006)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Moderate (Iron Deficiency Anemia)
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 100 mg Daily

  • 0 helpful marks
ALSSUX
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ALSSUX
Sex: F
Data Quality: 1 star
Bulbar: mild
Arms: moderate
Chest: none
Legs: moderate
I am: vg
I have:
ALS

See ALSSUX's full Riluzole history

May 21, 2012 (Started Mar 16, 2012)

  • Effectiveness
    None (for ALS (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 ALS (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
HappyPhysicist
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HappyPhysicist
Sex: M
Data Quality: 2 stars
Bulbar: moderate
Arms: mild
Chest: mild
Legs: moderate
I am: vg
I have:
ALS

See HappyPhysicist's full Riluzole history

Apr 15, 2012 (Started Jan 24, 2011)

  • Effectiveness
    Can’t tell (for ALS (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 ALS (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
Last updated:
Showing 10 of 103 patient evaluations for Riluzole