What is Rilutek?

Category: Prescription Drugs

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Generic name: Riluzole

Rilutek® is a brand name for riluzole, the first drug to be approved 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) 559 198
PLS (Primary Lateral Sclerosis) 14 8
PMA (Progressive Muscular Atrophy) 11 11
General health 3 0
Increase effect of another treatment 2 1
PBP (Progressive Bulbar Palsy) 2 7

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 48
None 134

Commonly reported side effects and conditions associated with Rilutek

Side effect Patients
Fatigue 15
Nausea 7
Stomach pain 5
Abdominal pain 4
Elevated liver enzymes 4
Cold feet 3

Show all 45 reported side effects

Dosages

Based on patients currently taking Rilutek

Dosage Patients
100 mg daily 20
50 mg twice daily 11
50 mg daily 2
100 mg twice 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 23
Other 21
Expense 16
Personal research 12
Change in health plan coverage 4
Course of treatment ended 4
See all 139 patients who’ve stopped taking Rilutek

Duration

Currently taking Rilutek

Duration Patients
Less than 1 month 2
1 - 6 months 2
6 months - 1 year 2
1 - 2 years 2
2 - 5 years 9
5 - 10 years 10
10 years or more 7

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 5
10 years or more 2
Adherence
Adherence Evaluations
Always 185
Usually 17
Sometimes 4
Never taken as prescribed 12
Burden
Burden Evaluations
Very hard to take 5
Somewhat hard to take 21
A little hard to take 44
Not at all hard to take 148
Cost per month
Cost per month Evaluations
$200+ 32
$100-199 13
$50-99 19
$25-49 19
< $25 82
Not specified 53

What people switch to and from

Patients stopped taking Rilutek and switched to:

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

35 patient evaluations for Rilutek

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

jr42
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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 Rilutek history

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
MStone
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MStone
Sex: M
Data Quality: 1 star
Bulbar: none
Arms: mild
Chest: mild
Legs: moderate
I am: g
I have:
ALS

See MStone's full Rilutek history

Mar 29, 2013 (Started May 15, 2012)

  • Effectiveness
    Can’t tell (for ALS (Amyotrophic Lateral Sclerosis))
  • Side effects
    None
  • Adherence
    Usually
  • Burden
    Somewhat hard to take
Dosage: 2 tablet(s) Daily
Advice & Tips: Ideally you're meant to take: - twice daily, exactly 12 hrs apart - after a 2 hr fast, and followed by a 1 hr fast. After lots of experimentation, I take at 6am & 6pm. Morning is easy, evening is harder to ensure both that I fast properly & that I remember to take. I set a reminder to eat at around 3:45pm, so that I can eat something before my fast from 4pm to 7pm.
Cost: < $25 monthly

  • 0 helpful marks
Last updated:
Showing 3 of 35 patient evaluations for Rilutek