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 Evaluations Perceived Effectiveness
Multiple Sclerosis 446 363
Relapse MS (exacerbation) 24 20
Diabetes Type 2 1 0
Doctor recommendation 1 0
Familial ALS 1 3
Fever/chills 1 0

Show all 18 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 58
Moderate 31
Mild 57
None 226

Commonly reported side effects and conditions associated with Gilenya

Side effect Patients
Fatigue 13
Headaches 11
Nausea 9
Elevated liver enzymes 8
Heart palpitations 6
Heart rate low (bradycardia) 6

Show all 116 reported side effects

Dosages

Based on patients currently taking Gilenya

Dosage Patients
0.5 mg daily 55
1 capsule(s) daily 10
0.05 mg daily 3
5 mg daily 3
0.5 mg m,w,f 2
1 tablet(s) daily 2
0.5 mg weekly 1
0.5 mcg daily 1
1 cap(s) daily 1
14 mg daily 1

See all 12 dosages

Why patients stopped taking Gilenya

Multiple reasons could be selected

Reason Patients
Doctor's advice 48
Side effects too severe 48
Did not seem to work 39
Other 27
Personal research 6
Expense 2
Change in health plan coverage 1
Course of treatment ended 1
See all 117 patients who’ve stopped taking Gilenya

Duration

Currently taking Gilenya

Duration Patients
Less than 1 month 1
1 - 6 months 4
6 months - 1 year 6
1 - 2 years 11
2 - 5 years 31
5 - 10 years 29

Stopped taking Gilenya

Duration Patients
Less than 1 month 19
1 - 6 months 32
6 months - 1 year 28
1 - 2 years 19
2 - 5 years 19
Adherence
Adherence Evaluations
Always 342
Usually 12
Sometimes 4
Never taken as prescribed 14
Burden
Burden Evaluations
Very hard to take 7
Somewhat hard to take 5
A little hard to take 22
Not at all hard to take 338
Cost per month
Cost per month Evaluations
$200+ 24
$100-199 12
$50-99 17
$25-49 42
< $25 188
Not specified 89

What people switch to and from

Patients started taking Gilenya after stopping:

Treatment Patients
Glatiramer acetate (Copaxone) 29
Natalizumab (Tysabri) 19
Interferon beta-1a SubQ injection (Rebif) 16
Dimethyl fumarate (Tecfidera) 15
Interferon beta-1a IM Injection (Avonex) 12

Show all 15 treatments patients report switching from

Patients stopped taking Gilenya and switched to:

Treatment Patients
Dimethyl fumarate (Tecfidera) 11
Natalizumab (Tysabri) 8
Teriflunomide (Aubagio) 6
Glatiramer acetate (Copaxone) 3
Interferon beta-1a SubQ injection (Rebif) 3

Show all 7 treatments patients report switching to

Last updated:

28 patient evaluations for Gilenya

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

cleonard
16690 thumb
cleonard
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: moderate
Speech: none
Swallowing: none
Upper limb: moderate
Walking: moderate
I am: g
I have:
MS

See cleonard's full Gilenya history

Jan 5, 2017 (Started Dec 15, 2013)

  • Effectiveness
    Moderate (for Relapse MS (exacerbation))
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Cost: $50-99 monthly

  • 0 helpful marks
Cfox1957
78327 thumb
Cfox1957
Sex: F
Data Quality: 2 stars
Sensation: Mild
Overall: Moderate
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: mild
Upper limb: moderate
Walking: moderate
I am: vg
I have:
MS

See Cfox1957's full Gilenya history

Sep 30, 2016 (Started Jul 01, 2013)

  • 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

Jun 9, 2016 (Started Jul 01, 2013)

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

May 13, 2016 (Started Jul 01, 2013)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • Side effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Advice & Tips: every morning, I have my coffee and my pill
Cost: < $25 monthly

  • 0 helpful marks
andreag
838 thumb
andreag
Sex: F
Data Quality: 2 stars
Sensation: Moderate
Overall: Mild
Cognition: moderate
Vision: none
Speech: none
Swallowing: none
Upper limb: moderate
Walking: severe
I am: g
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
Last updated:
Showing 3 of 28 patient evaluations for Gilenya