100 patient evaluations for Riluzole

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: vg
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
scart
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scart
Sex: M
Data Quality: 3 stars
Bulbar: mild
Arms: moderate
Chest: mild
Legs: none
I am: g
I have:
ALS

See scart's full Riluzole history

Jan 15, 2012 (Started Dec 15, 2005)

  • 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

  • 0 helpful marks
Tom M
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Tom M
Sex: M
Data Quality: 2 stars
Bulbar: none
Arms: severe
Chest: moderate
Legs: severe
I am: g
I have:
ALS

See Tom M's full Riluzole history

Jan 2, 2012 (Started Oct 14, 2008)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    None
  • Adherence
    Usually
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily

  • 0 helpful marks
pmotion
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pmotion
Sex: M
Data Quality: 1 star
Bulbar: mild
Arms: moderate
Chest: mild
Legs: moderate
I am: n
I have:
ALS

See pmotion's full Riluzole history

Dec 20, 2011 (Started Aug 27, 2010)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Mild (Tiredness)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: I stopped with Rilutek because I want to be fitter for the time I have left. I am now using vitamine D and feeling better than with Rilutek. Rilutek just is not the thing for me, why living 3 months longer at the end when your a wreck?
Cost: < $25 monthly

  • 0 helpful marks
ALSSUks
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ALSSUks
Sex: M
Data Quality: 3 stars
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe
I am: vb
I have:
ALS

See ALSSUks's full Riluzole history

Nov 9, 2011 (Started Jul 01, 2011)

  • Effectiveness
    Moderate (for ALS (Amyotrophic Lateral Sclerosis))
  • side effects
    Moderate (Insomnia, Fatigue)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily

  • 0 helpful marks
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