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
amyotrophic lateral sclerosis 2,103 1,021
primary lateral sclerosis 53 32
progressive muscular atrophy 39 29
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 75
Moderate 101
Mild 155
None 745

Commonly reported side effects and conditions associated with Riluzole

Side effect Patients
Fatigue 50
Nausea 35
Elevated liver enzymes 20
Tiredness 18
Stomach pain 13
Abdominal pain 9

Show all 136 reported side effects

Dosages

Based on patients currently taking Riluzole

Dosage Patients
50 mg twice daily 221
100 mg daily 55
50 mg daily 34
100 mg twice daily 18
50 mg three times daily 3
10 mg twice daily 1
25 mg twice daily 1
30 g twice daily 1
50 mg four times daily 1
2,500 mg twice daily 1

See all 11 dosages

Why patients stopped taking Riluzole

Multiple reasons could be selected

Reason Patients
Side effects too severe 227
Did not seem to work 199
Expense 89
Doctor's advice 76
Other 65
Personal research 56
Change in health plan coverage 15
Course of treatment ended 13
See all 531 patients who've stopped taking Riluzole

Duration

Currently taking Riluzole

Duration Patients
Less than 1 month 3
1 - 6 months 29
6 months - 1 year 71
1 - 2 years 87
2 - 5 years 93
5 - 10 years 38
10 years or more 16

Stopped taking Riluzole

Duration Patients
Less than 1 month 79
1 - 6 months 163
6 months - 1 year 76
1 - 2 years 98
2 - 5 years 96
5 - 10 years 21
10 years or more 3
Adherence
Adherence Evaluations
Always 891
Usually 90
Sometimes 25
Never taken as prescribed 70
Burden
Burden Evaluations
Very hard to take 32
Somewhat hard to take 98
A little hard to take 172
Not at all hard to take 774
Cost per month
Cost per month Evaluations
$200+ 115
$100-199 43
$50-99 73
$25-49 116
< $25 394
Not specified 335

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) 2
Last updated:

108 patient evaluations for Riluzole

newtons1971
104917 thumb
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
84779 thumb
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
4037 thumb
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
Last updated:
Showing 3 of 108 patient evaluations for Riluzole