What is Gilenya?

Category: Prescription Drugs

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Generic name: Fingolimod

Gilenya, a brand name for the drug fingolimod, is used to treat relapsing forms of multiple sclerosis (MS) by decreasing the number of MS flare-ups (relapses).

Reported purpose & perceived effectiveness

Purpose
Patients
Patients with evaluations
Perceived effectiveness

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell

Side effects

Side effects as an overall problem

Side effects as an overall problem
Severity Evaluations
Severe 40
Moderate 15
Mild 39
None 126

Commonly reported side effects and conditions associated with Gilenya

Side effect Patients
Headaches 11
Fatigue 9
Elevated liver enzymes 8
Heart palpitations 6
Nausea 6
Very low white blood cell count 6

Show all 113 reported side effects

Dosages

Based on patients currently taking Gilenya

Dosage Patients
0.5 mg daily 62
1 capsule(s) daily 15
0.05 mg daily 4
1 mg daily 4
5 mg daily 4
1 cap(s) daily 3
1 tablet(s) daily 2
0.5 mg weekly 1
0.5 cap(s) daily 1
0.5 g daily 1

See all 18 dosages

Why patients stopped taking Gilenya

Multiple reasons could be selected

Reason Patients
Doctor's advice 46
Side effects too severe 46
Did not seem to work 37
Other 23
Personal research 5
Change in health plan coverage 1
Expense 1
See all 107 patients who’ve stopped taking Gilenya

Duration

Currently taking Gilenya

Duration Patients
1-3 months 3
3-6 months 4
6 months-1 year 8
1-2 years 15
2 years or more 75

Stopped taking Gilenya

Duration Patients
0-1 month 18
1-3 months 17
3-6 months 12
6 months-1 year 26
1-2 years 18
2 years or more 16

Adherence


Always
Patients
196
89%
Usually
Patients
9
4%
Sometimes
Patients
3
1%
Never taken as prescribed
Patients
12
5%

Burden


Very hard to take
Patients
5
2%
Somewhat hard to take
Patients
3
1%
A little hard to take
Patients
9
4%
Not at all hard to take
Patients
203
92%

Cost per month


Cost per month
$200+
Patients
13
6%
Cost per month
$100-199
Patients
8
4%
Cost per month
$50-99
Patients
10
5%
Cost per month
$25-49
Patients
24
11%
Cost per month
< $25
Patients
106
48%
Cost per month
Not specified
Patients
59
27%

What people switch to and from

Patients started taking Gilenya after stopping:

Treatment Patients
Glatiramer acetate (Copaxone) 21
Natalizumab (Tysabri) 16
Interferon beta-1a IM Injection (Avonex) 11
Interferon beta-1a SubQ injection (Rebif) 11
Dimethyl fumarate (Tecfidera) 10

Show all 13 treatments patients report switching from

Patients stopped taking Gilenya and switched to:

Treatment Patients
Dimethyl fumarate (Tecfidera) 9
Natalizumab (Tysabri) 6
Teriflunomide (Aubagio) 4
Glatiramer acetate (Copaxone) 2
Interferon beta-1a SubQ injection (Rebif) 2

Show all 7 treatments patients report switching to

Last updated:

27 patient evaluations for Gilenya

jmartell
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jmartell
Sex: F
Data Quality: 3 stars
Relapse: Moderate
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: mild
Speech: mild
Swallowing: mild
Upper limb: mild
Walking: mild
I am: vg
I have:
MS

See jmartell's full Gilenya history

Mar 29, 2016 (Started Jan 14, 2011)

  • Effectiveness
    None (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Never taken as prescribed
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: < $25 monthly

Aug 17, 2013 (Started Jan 14, 2011)

  • Effectiveness
    Slight (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: < $25 monthly

Dec 22, 2011 (Started Jan 14, 2011)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: < $25 monthly

Mar 24, 2011 (Started Jan 14, 2011)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: < $25 monthly

  • 2 helpful marks
andreag
838 thumb
andreag
Sex: F
Data Quality: 3 stars
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: none
Speech: none
Swallowing: none
Upper limb: moderate
Walking: severe
I am: vg
I have:
MS

See andreag's full Gilenya history

Jan 15, 2016 (Started Jun 23, 2012)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    Severe (Low white blood cell count (leukopenia))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Advice & Tips: Was a pill rather than shot.
Cost: $100-199 monthly

Dec 15, 2015 (Started Jun 23, 2012)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    Severe (Low white blood cell count (leukopenia))
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 10 mg Daily
Advice & Tips: Taking a pill was nice.
Cost: $100-199 monthly

  • 0 helpful marks
helchr@hmnet.dk
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helchr@hmnet.dk
Sex: M
Data Quality: 1 star
Sensation: Moderate
Overall: Mild
Cognition: mild
Vision: mild
Speech: mild
Swallowing: mild
Upper limb: mild
Walking: moderate
I have:
MS

See helchr@hmnet.dk's full Gilenya history

Aug 18, 2015 (Started Oct 08, 2012)

  • Effectiveness
    Moderate (for Relapse MS (exacerbation))
  • Effectiveness
    Moderate (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 capsule(s) Daily
Advice & Tips: Still happy using gilenya
Cost: < $25 monthly

Jun 22, 2013 (Started Oct 08, 2012)

  • Effectiveness
    Can’t tell (for Relapse MS (exacerbation))
  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 capsule(s) Daily
Advice & Tips: I have been very happy taking the Gilenya, having absolute no negative side effects.
Cost: < $25 monthly

  • 0 helpful marks
Last updated:
Showing 3 of 27 patient evaluations for Gilenya