What is Riluzole?

Category: Prescription Drugs

Most popular types: Rilutek

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Riluzole is a drug used to treat 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) 2,075 996
PLS (Primary Lateral Sclerosis) 53 41
PMA (Progressive Muscular Atrophy) 38 28
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 74
Moderate 99
Mild 151
None 727

Commonly reported side effects and conditions associated with Riluzole

Side effect Patients
Fatigue 50
Nausea 33
Elevated liver enzymes 20
Tiredness 14
Stomach pain 13
Abdominal pain 9

Show all 134 reported side effects

Dosages

Based on patients currently taking Riluzole

Dosage Patients
50 mg twice daily 215
100 mg daily 63
50 mg daily 33
100 mg twice daily 18
50 mg three times daily 3
2,500 mg twice daily 2
50 mg weekly 1
25 mg twice daily 1
30 g twice daily 1
50 mg four times daily 1

See all 11 dosages

Why patients stopped taking Riluzole

Multiple reasons could be selected

Reason Patients
Side effects too severe 221
Did not seem to work 196
Expense 89
Doctor's advice 76
Other 66
Personal research 55
Change in health plan coverage 15
Course of treatment ended 13
See all 524 patients who’ve stopped taking Riluzole

Duration

Currently taking Riluzole

Duration Patients
Less than 1 month 2
1 - 6 months 42
6 months - 1 year 68
1 - 2 years 84
2 - 5 years 88
5 - 10 years 41
10 years or more 19

Stopped taking Riluzole

Duration Patients
Less than 1 month 78
1 - 6 months 159
6 months - 1 year 75
1 - 2 years 98
2 - 5 years 95
5 - 10 years 21
10 years or more 3
Adherence
Adherence Evaluations
Always 869
Usually 86
Sometimes 24
Never taken as prescribed 72
Burden
Burden Evaluations
Very hard to take 31
Somewhat hard to take 97
A little hard to take 167
Not at all hard to take 756
Cost per month
Cost per month Evaluations
$200+ 114
$100-199 41
$50-99 73
$25-49 113
< $25 384
Not specified 326

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:

110 patient evaluations for Riluzole

723 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: moderate
I am: vg
I have:
ALS

See Criss02's full Riluzole history

Mar 26, 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 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
jr42
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jr42
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: severe
Chest: mild
Legs: moderate
I am: g
I have:
PMA

See jr42's full Riluzole history

Mar 12, 2017 (Started May 06, 2004)

  • Effectiveness
    Moderate (for PMA (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 PMA (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 PMA (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 PMA (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 PMA (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
90068 thumb
Kappy4
Sex: M
Data Quality: 3 stars
Bulbar: none
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 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
Last updated:
Showing 3 of 110 patient evaluations for Riluzole