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
Patients with evaluations
Perceived effectiveness

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

Side effects

Side effects as an overall problem

Side effects of Gilenya

Severe
38
Moderate
14
Mild
37
None
134

Commonly reported side effects, conditions, and hospitalizations associated with Gilenya

Patients
11
Patients
8
Patients
7
Patients
7
Hospitalization
Patients
7
Hospitalization
Patients
7

Show all 113 reported side effects

Dosages

Most common dosages (by patients currently taking Gilenya)
Dosage
0.5 mg daily
Patients
203
Dosage
1 capsule(s) daily
Patients
30
Dosage
0.05 mg daily
Patients
21
Dosage
1 cap(s) daily
Patients
14
Dosage
5 mg daily
Patients
13
Dosage
1 mg daily
Patients
12
Dosage
50 mg daily
Patients
4
Dosage
1 tablet(s) daily
Patients
3
Dosage
10 mg daily
Patients
3
Dosage
500 mcg daily
Patients
3

Dosages based on patients currently taking Gilenya.

Why Patients Stopped Taking Gilenya (multiple reasons could be selected)
Reason
Doctor's advice
Patients
43
Reason
Side effects too severe
Patients
42
Reason
Did not seem to work
Patients
35
Reason
Other
Patients
23
Reason
Personal research
Patients
4
Reason
Not indicated
Patients
2
Reason
Expense
Patients
1
Reason
Change in health plan coverage
Patients
1
See all 106 patients who’ve stopped taking Gilenya

Duration

Currently Taking Gilenya
Duration
Patients
Duration
0-1 month
Patients
1
Duration
1-3 months
Patients
1
Duration
3-6 months
Patients
5
Duration
6 months-1 year
Patients
7
Duration
1-2 years
Patients
16
Duration
2 years or more
Patients
92
Stopped Taking Gilenya
Duration
Patients
Duration
0-1 month
Patients
12
Duration
1-3 months
Patients
15
Duration
3-6 months
Patients
12
Duration
6 months-1 year
Patients
26
Duration
1-2 years
Patients
16
Duration
2 years or more
Patients
13

Adherence


Always
Patients
199
89%
Usually
Patients
10
4%
Sometimes
Patients
3
1%
Never taken as prescribed
Patients
11
5%

Burden


Very hard to take
Patients
5
2%
Somewhat hard to take
Patients
4
2%
A little hard to take
Patients
8
4%
Not at all hard to take
Patients
206
92%

Cost per month


Cost per month
$200+
Patients
11
5%
Cost per month
$100-199
Patients
9
4%
Cost per month
$50-99
Patients
10
4%
Cost per month
$25-49
Patients
24
11%
Cost per month
< $25
Patients
110
49%
Cost per month
Not specified
Patients
59
26%

What people switch to and from

Patients started taking Gilenya after stopping:
Treatment name(s)
Glatiramer acetate (Copaxone)
Patients
17
Treatment name(s)
Natalizumab (Tysabri, Antegren)
Patients
15
Treatment name(s)
Interferon beta-1a IM Injection (Avonex, Avonex Prefilled Syringe, Avonex Pen)
Patients
13
Treatment name(s)
Interferon beta-1a SubQ injection (Rebif, Rebif Rebidose)
Patients
9
Treatment name(s)
Dimethyl fumarate (Tecfidera)
Patients
8

See all 11 treatments patients report switching from

Patients stopped taking Gilenya and switched to:
Treatment name(s)
Natalizumab (Tysabri, Antegren)
Patients
7
Treatment name(s)
Dimethyl fumarate (Tecfidera)
Patients
5
Treatment name(s)
Teriflunomide (Aubagio)
Patients
5
Treatment name(s)
Glatiramer acetate (Copaxone)
Patients
2
Treatment name(s)
Interferon beta-1a SubQ injection (Rebif, Rebif Rebidose)
Patients
2

See all 8 treatments patients report switching to

Last updated:

26 patient evaluations for Gilenya

helchr@hmnet.dk
Portrait default thumb
helchr@hmnet.dk
Sex: M
Data Quality: 0 stars
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
aubri328
44032 thumb
aubri328
Sex: F
Data Quality: 2 stars
Sensation: None
Overall: None
Cognition: none
Vision: none
Speech: none
Swallowing: none
Upper limb: none
Walking: none
I am: g
I have:
MS

See aubri328's full Gilenya history

Nov 17, 2014 (Started Feb 15, 2009)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side Effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Advice & Tips: My WBC count dropped very low, dangerously low. I am hoping that will be able to return to taking this medication once it returns. The biggest thing is to MAKE SURE you keep your Dr appointments and DO YOUR BLOOD WORK!
Cost: $50-99 monthly

Aug 18, 2013 (Started Feb 15, 2009)

  • Effectiveness
    Major (for Multiple Sclerosis)
  • Side Effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 0.5 mg Daily
Advice & Tips: Taking this with the rest of your medications is key. The biggest difficultly may be how you receive your medication. If you normally go to the pharmacy and pick up your prescriptions most insurance carries require this drug to be handled through "specialty" pharmacies and delivered by mail ordering can be automatic as long as you set it up and they allow it. The company has programs to help save on costs.
Cost: $25-49 monthly

  • 0 helpful marks
crisd39
981 thumb
crisd39
Sex: M
Data Quality: 2 stars
Sensation: Moderate
Overall: Moderate
Cognition: moderate
Vision: moderate
Speech: moderate
Swallowing: mild
Upper limb: moderate
Walking: moderate
I am: b
I have:
MS

See crisd39's full Gilenya history

Aug 2, 2014 (Started Feb 15, 2012)

  • Effectiveness
    None (for Multiple Sclerosis)
  • Side Effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 capsule(s) Daily
Cost: < $25 monthly

Jun 22, 2013 (Started Feb 15, 2012)

  • Effectiveness
    Can’t tell (for Multiple Sclerosis)
  • Side Effects
    None
  • Adherence
    Always
  • Burden
    Not at all hard to take
Dosage: 1 capsule(s) Daily
Cost: < $25 monthly

  • 0 helpful marks
Last updated:
Showing 3 of 26 patient evaluations for Gilenya