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) 2,032 957
PLS (Primary Lateral Sclerosis) 52 38
PMA (Progressive Muscular Atrophy) 38 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 68
Moderate 97
Mild 142
None 701

Commonly reported side effects and conditions associated with Riluzole

Side effect Patients
Fatigue 46
Nausea 30
Elevated liver enzymes 18
Tiredness 13
Stomach pain 12
Abdominal pain 9

Show all 133 reported side effects

Dosages

Based on patients currently taking Riluzole

Dosage Patients
50 mg twice daily 216
100 mg daily 59
50 mg daily 31
100 mg twice daily 15
50 mg three times daily 2
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 216
Did not seem to work 194
Expense 89
Doctor's advice 75
Other 64
Personal research 54
Change in health plan coverage 15
Course of treatment ended 13
See all 515 patients who’ve stopped taking Riluzole

Duration

Currently taking Riluzole

Duration Patients
Less than 1 month 2
1 - 6 months 48
6 months - 1 year 57
1 - 2 years 82
2 - 5 years 84
5 - 10 years 42
10 years or more 18

Stopped taking Riluzole

Duration Patients
Less than 1 month 76
1 - 6 months 155
6 months - 1 year 75
1 - 2 years 97
2 - 5 years 93
5 - 10 years 21
10 years or more 3
Adherence
Adherence Evaluations
Always 834
Usually 85
Sometimes 22
Never taken as prescribed 67
Burden
Burden Evaluations
Very hard to take 28
Somewhat hard to take 94
A little hard to take 163
Not at all hard to take 723
Cost per month
Cost per month Evaluations
$200+ 111
$100-199 40
$50-99 72
$25-49 106
< $25 371
Not specified 308

What people switch to and from

Patients started taking Riluzole after stopping:

Treatment Patients
Intravenous Immunoglobulin (IVIG) (Gammaglobulin (IVIg)) 1
Lunasin (Lunasin Duke Virtual Trial) 1

Patients stopped taking Riluzole and switched to:

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

109 patient evaluations for Riluzole

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

Criss02
84779 thumb
Criss02
Sex: F
Data Quality: 2 stars
Bulbar: none
Arms: mild
Chest: mild
Legs: mild
I am: vg
I have:
ALS

See Criss02's full Riluzole history

Jan 28, 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

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: none
Arms: moderate
Chest: moderate
Legs: moderate
I am: vg
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
89060 thumb
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 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 109 patient evaluations for Riluzole