What is Rilutek?

Category: Prescription Drugs

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Generic name: Riluzole

Rilutek® is a brand name for riluzole, a drug used for the treatment of amyotrophic lateral sclerosis (ALS). Rilutek 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) 564 209
PLS (Primary Lateral Sclerosis) 14 8
PMA (Progressive Muscular Atrophy) 11 12
General health 3 0
Increase effect of another treatment 2 1
PBP (Progressive Bulbar Palsy) 2 8

Show all 13 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 8
Moderate 28
Mild 51
None 143

Commonly reported side effects and conditions associated with Rilutek

Side effect Patients
Fatigue 16
Nausea 7
Stomach pain 5
Abdominal pain 4
Elevated liver enzymes 4
Cold feet 3

Show all 47 reported side effects

Dosages

Based on patients currently taking Rilutek

Dosage Patients
100 mg daily 20
50 mg twice daily 13
50 mg daily 2
100 mg twice daily 1
daily 1

Why patients stopped taking Rilutek

Multiple reasons could be selected

Reason Patients
Did not seem to work 52
Side effects too severe 51
Doctor's advice 25
Other 21
Expense 16
Personal research 12
Change in health plan coverage 4
Course of treatment ended 4
See all 141 patients who’ve stopped taking Rilutek

Duration

Currently taking Rilutek

Duration Patients
1 - 6 months 3
6 months - 1 year 3
1 - 2 years 4
2 - 5 years 10
5 - 10 years 8
10 years or more 9

Stopped taking Rilutek

Duration Patients
Less than 1 month 14
1 - 6 months 31
6 months - 1 year 28
1 - 2 years 30
2 - 5 years 29
5 - 10 years 7
10 years or more 2
Adherence
Adherence Evaluations
Always 196
Usually 17
Sometimes 4
Never taken as prescribed 13
Burden
Burden Evaluations
Very hard to take 5
Somewhat hard to take 21
A little hard to take 46
Not at all hard to take 158
Cost per month
Cost per month Evaluations
$200+ 32
$100-199 13
$50-99 19
$25-49 20
< $25 88
Not specified 58

What people switch to and from

Patients stopped taking Rilutek and switched to:

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

36 patient evaluations for Rilutek

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

jr42
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jr42
Sex: M
Data Quality: 2 stars
Bulbar: none
Arms: severe
Chest: mild
Legs: moderate
I am: g
I have:
PMA

See jr42's full Rilutek 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
Gudjon
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Gudjon
Sex: M
Data Quality: 2 stars
Bulbar: none
Arms: mild
Chest: mild
Legs: moderate
I am: vg
I have:
PLS

See Gudjon's full Rilutek history

May 5, 2016 (Started May 15, 2004)

  • Effectiveness
    Can’t tell (for PLS (Primary Lateral Sclerosis))
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Cost: < $25 monthly

Apr 9, 2009 (Started May 15, 2004)

  • Effectiveness
    Can’t tell (for PLS (Primary Lateral Sclerosis))
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily
Advice & Tips: We should all ask them for better drug. Sins they are alone, nothing new is coming from them.
Cost: < $25 monthly

  • 0 helpful marks
Janshar
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Janshar
Sex: F
Data Quality: 2 stars
Bulbar: moderate
Arms: severe
Chest: mild
Legs: severe
I have:
ALS

See Janshar's full Rilutek history

Feb 15, 2016 (Started Oct 10, 2010)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • Side effects
    Mild (Dry skin)
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 100 mg Daily

  • 0 helpful marks
Last updated:
Showing 3 of 36 patient evaluations for Rilutek