97 patient evaluations for Riluzole

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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): None
  • Side Effects: Severe
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): None
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Usually
  • Burden: Somewhat
Dosage: 100 mg Daily
Cost: $25-49 monthly

Feb 4, 2011 (Started Jan 24, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
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: none
Legs: none
I am: g
I have:
ALS

See scart's full Riluzole history

Jan 15, 2012 (Started Dec 15, 2005)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily

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

See Tom M's full Riluzole history

Jan 2, 2012 (Started Oct 14, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Usually
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Mild
  • Adherence: Always
  • Burden: Not at all
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)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Moderate
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily

  • 0 helpful marks
faeroe347
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faeroe347
Sex: M
Data Quality: 2 stars
Bulbar: severe
Arms: severe
Chest: moderate
Legs: severe
I am: g
I have:
ALS

See faeroe347's full Riluzole history

Oct 31, 2011 (Started Sep 10, 2010)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Advice & Tips: I took this medication for a year because the doctors handed it to me right after my diagnosis. Instead of doing this, I recommend a self-trial to see how tired this stuff makes you.
Cost: < $25 monthly

  • 0 helpful marks
Ronc75
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Ronc75
Sex: M
Data Quality: 1 star
Bulbar: severe
Arms: mild
Chest: moderate
Legs: moderate
I am: n
I have:
ALS

See Ronc75's full Riluzole history

Oct 19, 2011 (Started Aug 01, 2011)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: A little
Dosage: 100 mcg Daily
Cost: < $25 monthly

  • 0 helpful marks
pachamama
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pachamama
Sex: M
Data Quality: 1 star
Bulbar: moderate
Arms: severe
Chest: moderate
Legs: severe
I am: b
I have:
ALS

See pachamama's full Riluzole history

Sep 26, 2011 (Started Dec 20, 2010)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 100 mg Daily
Advice & Tips: I'm not sure if I will ever know whether riluzole is helping me or not. I can say the only reason I'm taking it is because it is covered by my insurance. It is my understanding that it would cost $14,000 per year if I had to pay full price. I'm not certain that the promised "1 to 3 months"survival time would seem worth that cost.
Cost: < $25 monthly

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

See Pen'sup's full Riluzole history

Sep 14, 2011 (Started Jun 15, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Sometimes
  • Burden: Very
Dosage: 100 mg Daily
Cost: $50-99 monthly

Feb 11, 2011 (Started Jun 15, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Sometimes
  • Burden: Very
Dosage: 100 mg Daily
Cost: < $25 monthly

Dec 20, 2010 (Started Jun 15, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Never
  • Burden: Very
Dosage: 100 mg Daily
Advice & Tips: I take with other pills-- just too busy to take as presribed
Cost: < $25 monthly

Nov 9, 2009 (Started Jun 15, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Sometimes
  • Burden: Very
Dosage: 100 mg Daily
Cost: < $25 monthly

Nov 17, 2008 (Started Jun 15, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Usually
  • Burden: Not at all
Dosage: 100 mg Daily
Advice & Tips: I have a really hard time being able to take the evening dose at a time when I haven't eaten in 2 hr or don't need to take other medicine within the next hour. many times I take both Li and this at same time -- right before bedtime
Cost: < $25 monthly

  • 0 helpful marks
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Showing 10 of 97 patient evaluations for Riluzole