109 patient evaluations for Riluzole

746 members have decided to share their profiles only with other members of PatientsLikeMe.

newtons1971
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newtons1971
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: mild
Chest: none
Legs: mild
I am: vg
I have:
ALS

See newtons1971's full Riluzole history

May 31, 2017 (Started Sep 08, 2015)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: < $25 monthly

Aug 14, 2016 (Started Sep 08, 2015)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: How could you even begin to evaluate such a subjective drug.
Cost: < $25 monthly

Apr 27, 2016 (Started Sep 08, 2015)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: < $25 monthly

Nov 26, 2015 (Started Sep 08, 2015)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: < $25 monthly

Nov 6, 2015 (Started Sep 08, 2015)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: I am not sure of what effects I am looking for but I feel no different than when I was not taking the drug. The only thing that does come to mind is that maybe don't cramp up as much.

  • 0 helpful marks
Criss02
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Criss02
Sex: F
Data Quality: 2 stars
Bulbar: none
Arms: mild
Chest: mild
Legs: moderate
I am: g
I have:
ALS

See Criss02's full Riluzole history

Mar 26, 2017 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jan 28, 2017 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jan 12, 2017 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Dec 14, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Nov 30, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Oct 17, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Sep 28, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Sep 19, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Sep 6, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Aug 16, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Aug 5, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jul 22, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Jul 7, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

May 31, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

May 12, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Somewhat hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

May 3, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Apr 26, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

Apr 18, 2016 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: $25-49 monthly

  • 1 helpful mark
jr42
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jr42
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: severe
Chest: mild
Legs: moderate
I am: vg
I have:
PMA

See jr42's full Riluzole history

Mar 12, 2017 (Started May 06, 2004)

  • Effectiveness
    Moderate (for progressive muscular atrophy)
  • Side effects
    Mild (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: Skin irritation, Flaky skin on face and head

Jun 10, 2016 (Started May 06, 2004)

  • Effectiveness
    Moderate (for progressive muscular atrophy)
  • Side effects
    Mild (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: Skin irritation, Flaky skin on face and head

Apr 3, 2013 (Started May 06, 2004)

  • Effectiveness
    Major (for progressive muscular atrophy)
  • Side effects
    Moderate (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: Skin irritation, Flaky skin on face and head

Sep 3, 2010 (Started May 06, 2004)

  • Effectiveness
    Moderate (for progressive muscular atrophy)
  • Side effects
    Moderate (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: itchiness all over,flaking of skin off face/head- wash hair every day,use DermaVeen shower wash/moisturising lotion daily.
Side effects: Skin irritation, Flaky skin on face and head

Sep 15, 2008 (Started May 06, 2004)

  • Effectiveness
    Slight (for progressive muscular atrophy)
  • Side effects
    Mild (Flaky skin on face and head, Skin irritation)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Side effects: Skin irritation, Flaky skin on face and head

  • 1 helpful mark
Kappy4
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Kappy4
Sex: M
Data Quality: 3 stars
Bulbar: mild
Arms: moderate
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See Kappy4's full Riluzole history

Dec 9, 2016 (Started Mar 15, 2016)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: Hard to judge how effective this is because the disease doesn't progress at a steady rate

Nov 21, 2016 (Started Mar 15, 2016)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily

Nov 14, 2016 (Started Mar 15, 2016)

  • Effectiveness
    Slight (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily

  • 0 helpful marks
Fz950
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Fz950
Sex: F
Data Quality: 2 stars
Bulbar: none
Arms: none
Chest: none
Legs: moderate
I am: n
I have:
ALS

See Fz950's full Riluzole history

Dec 2, 2016 (Started Oct 01, 2016)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 50 mg Twice daily

  • 0 helpful marks
vateresa
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vateresa
Sex: F
Data Quality: 3 stars
Bulbar: mild
Arms: mild
Chest: none
Legs: moderate
I am: vg
I have:
ALS

See vateresa's full Riluzole history

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
Mike_Sypniewski
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Mike_Sypniewski
Sex: M
Data Quality: 3 stars
Bulbar: severe
Arms: severe
Chest: severe
Legs: severe
I am: g
I have:
ALS

See Mike_Sypniewski's full Riluzole history

Oct 25, 2016 (Started Sep 15, 2013)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Never taken as prescribed
  • Burden
    Not at all hard to take
Advice & Tips: stopped now that I can no longer eat, drink, or breathe without a ventilator
Cost: < $25 monthly

Oct 23, 2016 (Started Sep 15, 2013)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Never taken as prescribed
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: < $25 monthly

Oct 14, 2015 (Started Sep 15, 2013)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Advice & Tips: I don't think it's doing anything.
Cost: < $25 monthly

Feb 8, 2015 (Started Sep 15, 2013)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily
Cost: < $25 monthly

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

See Skinner's full Riluzole history

Oct 6, 2016 (Started Oct 11, 2010)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Stopped taking because the VA stopped sending it to us. Also after 4 years of taking did not see any results.

Jul 1, 2015 (Started Oct 11, 2010)

  • Effectiveness
    None (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: Did not see any changes from taking this drug.

  • 0 helpful marks
jackconrad
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jackconrad
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: moderate
Chest: none
Legs: moderate
I am: g
I have:
ALS

See jackconrad's full Riluzole history

Sep 27, 2016 (Started Jun 15, 2016)

  • Effectiveness
    Slight (for amyotrophic lateral sclerosis)
  • Side effects
    Moderate (Shortness of breath (dyspnea), Balance problems, Mood swings, Fatigue)
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: 50 mg Daily
Advice & Tips: 1 A DAY
Cost: $100-199 monthly

  • 0 helpful marks
Navy Nurse
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Navy Nurse
Sex: F
Data Quality: 2 stars
Bulbar: moderate
Arms: severe
Chest: none
Legs: moderate
I have:
ALS

See Navy Nurse's full Riluzole history

Aug 30, 2016 (Started Oct 18, 2001)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily

Aug 13, 2011 (Started Oct 18, 2001)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily

Nov 17, 2010 (Started Oct 18, 2001)

  • Effectiveness
    Can’t tell (for amyotrophic lateral sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 50 mg Twice daily

  • 0 helpful marks
Last updated:
Showing 10 of 109 patient evaluations for Riluzole