What is Gilenya?

Category: Prescription Drugs

true

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 437 346
Relapse MS (exacerbation) 23 18
Diabetes Type 2 1 0
Doctor recommendation 1 0
Familial ALS 1 2
Fever/chills 1 0

Show all 17 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 53
Moderate 30
Mild 56
None 213

Commonly reported side effects and conditions associated with Gilenya

Side effect Patients
Headaches 11
Fatigue 10
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 54
1 capsule(s) daily 11
5 mg daily 4
0.05 mg daily 3
1 tablet(s) daily 2
0.5 mg weekly 1
0.5 mg m,w,f 1
0.25 mg daily 1
0.5 g daily 1
0.5 mcg daily 1

See all 15 dosages

Why patients stopped taking Gilenya

Multiple reasons could be selected

Reason Patients
Side effects too severe 47
Doctor's advice 45
Did not seem to work 38
Other 25
Personal research 5
Change in health plan coverage 1
Course of treatment ended 1
Expense 1
See all 112 patients who’ve stopped taking Gilenya

Duration

Currently taking Gilenya

Duration Patients
1 - 6 months 5
6 months - 1 year 12
1 - 2 years 10
2 - 5 years 39
5 - 10 years 18

Stopped taking Gilenya

Duration Patients
Less than 1 month 19
1 - 6 months 31
6 months - 1 year 26
1 - 2 years 19
2 - 5 years 17
Adherence
Adherence Evaluations
Always 324
Usually 11
Sometimes 4
Never taken as prescribed 13
Burden
Burden Evaluations
Very hard to take 6
Somewhat hard to take 5
A little hard to take 19
Not at all hard to take 322
Cost per month
Cost per month Evaluations
$200+ 22
$100-199 12
$50-99 15
$25-49 39
< $25 178
Not specified 86

What people switch to and from

Patients started taking Gilenya after stopping:

Treatment Patients
Glatiramer acetate (Copaxone) 28
Natalizumab (Tysabri) 17
Interferon beta-1a SubQ injection (Rebif) 15
Dimethyl fumarate (Tecfidera) 14
Interferon beta-1a IM Injection (Avonex) 12

Show all 14 treatments patients report switching from

Patients stopped taking Gilenya and switched to:

Treatment Patients
Dimethyl fumarate (Tecfidera) 11
Natalizumab (Tysabri) 7
Teriflunomide (Aubagio) 5
Interferon beta-1a SubQ injection (Rebif) 3
Alemtuzumab (Lemtrada) 2

Show all 7 treatments patients report switching to

Last updated:

27 patient evaluations for Gilenya

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

Cfox1957
78327 thumb
Cfox1957
Sex: F
Data Quality: 3 stars
Sensation: Mild
Overall: Mild
Cognition: moderate
Vision: mild
Speech: moderate
Swallowing: mild
Upper limb: mild
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
helchr@hmnet.dk
Portrait default thumb
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