What is Riluzole?

Category: Prescription Drugs

Most popular types: Rilutek

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Riluzole is the first drug to be approved for amyotrophic lateral sclerosis (ALS). Riluzole does not cure ALS or improve symptoms, but may extend survival or the time to tracheostomy.

Reported purpose & perceived effectiveness
Purpose Patients Evaluations Perceived Effectiveness
ALS (Amyotrophic Lateral Sclerosis) 2,015 935
PLS (Primary Lateral Sclerosis) 52 38
PMA (Progressive Muscular Atrophy) 37 26
General health 14 9
Stiffness/Spasticity 8 3
Muscle twitching (fasciculations) 7 4

Show all 24 reasons taken


  • Major
  • Moderate
  • Slight
  • None
  • Can't tell

Side effects

Side effects as an overall problem

Side effects as an overall problem
Severity Evaluations
Severe 67
Moderate 94
Mild 140
None 684

Commonly reported side effects and conditions associated with Riluzole

Side effect Patients
Fatigue 46
Nausea 29
Elevated liver enzymes 18
Tiredness 13
Stomach pain 11
Abdominal pain 9

Show all 130 reported side effects

Dosages

Based on patients currently taking Riluzole

Dosage Patients
50 mg twice daily 207
100 mg daily 63
50 mg daily 32
100 mg twice daily 13
50 mg three times daily 3
daily 2
50 mg weekly 1
30 g twice daily 1
50 mg four times daily 1
5,000 mg twice daily 1

Why patients stopped taking Riluzole

Multiple reasons could be selected

Reason Patients
Side effects too severe 214
Did not seem to work 192
Expense 89
Doctor's advice 73
Other 62
Personal research 54
Change in health plan coverage 15
Course of treatment ended 13
See all 509 patients who’ve stopped taking Riluzole

Duration

Currently taking Riluzole

Duration Patients
Less than 1 month 1
1 - 6 months 46
6 months - 1 year 58
1 - 2 years 81
2 - 5 years 83
5 - 10 years 41
10 years or more 18

Stopped taking Riluzole

Duration Patients
Less than 1 month 76
1 - 6 months 152
6 months - 1 year 75
1 - 2 years 97
2 - 5 years 93
5 - 10 years 18
10 years or more 3
Adherence
Adherence Evaluations
Always 812
Usually 86
Sometimes 21
Never taken as prescribed 66
Burden
Burden Evaluations
Very hard to take 27
Somewhat hard to take 93
A little hard to take 160
Not at all hard to take 705
Cost per month
Cost per month Evaluations
$200+ 110
$100-199 37
$50-99 72
$25-49 103
< $25 363
Not specified 300

What people switch to and from

Patients started taking Riluzole after stopping:

Treatment Patients
Lunasin (Lunasin Duke Virtual Trial) 1

Patients stopped taking Riluzole and switched to:

Treatment Patients
Baclofen (Mylan-Baclofen) 1
Last updated:

108 patient evaluations for Riluzole

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

Criss02
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Criss02
Sex: F
Data Quality: 2 stars
Bulbar: none
Arms: mild
Chest: none
Legs: mild
I am: vg
I have:
ALS

See Criss02's full Riluzole history

Jan 12, 2017 (Started May 15, 2014)

  • Effectiveness
    Can’t tell (for ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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 ALS (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
Kappy4
90068 thumb
Kappy4
Sex: M
Data Quality: 3 stars
Bulbar: mild
Arms: mild
Chest: moderate
Legs: moderate
I am: n
I have:
ALS

See Kappy4's full Riluzole history

Dec 9, 2016 (Started Mar 15, 2016)

  • Effectiveness
    Can’t tell (for ALS (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 ALS (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 ALS (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: mild
I am: g
I have:
ALS

See Fz950's full Riluzole history

Dec 2, 2016 (Started Oct 01, 2016)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • Side effects
    None
  • Adherence
    Always
  • Burden
    A little hard to take
Dosage: 50 mg Twice daily

  • 0 helpful marks
Last updated:
Showing 3 of 108 patient evaluations for Riluzole