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 428 329
Relapse MS (exacerbation) 22 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 52
Moderate 28
Mild 56
None 199

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 115 reported side effects

Dosages

Based on patients currently taking Gilenya

Dosage Patients
0.5 mg daily 52
1 capsule(s) daily 8
5 mg daily 4
0.05 mg daily 3
1 tablet(s) daily 3
0.5 mg weekly 1
0.5 mg m,w,f 1
0.5 g daily 1
0.5 mcg daily 1
1 cap(s) daily 1

See all 15 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 38
Other 24
Personal research 5
Change in health plan coverage 1
Expense 1
See all 109 patients who’ve stopped taking Gilenya

Duration

Currently taking Gilenya

Duration Patients
1 - 6 months 10
6 months - 1 year 8
1 - 2 years 13
2 - 5 years 34
5 - 10 years 15

Stopped taking Gilenya

Duration Patients
Less than 1 month 18
1 - 6 months 30
6 months - 1 year 26
1 - 2 years 19
2 - 5 years 16
Adherence
Adherence Evaluations
Always 307
Usually 11
Sometimes 4
Never taken as prescribed 13
Burden
Burden Evaluations
Very hard to take 5
Somewhat hard to take 5
A little hard to take 19
Not at all hard to take 306
Cost per month
Cost per month Evaluations
$200+ 20
$100-199 10
$50-99 15
$25-49 37
< $25 172
Not specified 81

What people switch to and from

Patients started taking Gilenya after stopping:

Treatment Patients
Glatiramer acetate (Copaxone) 25
Natalizumab (Tysabri) 17
Interferon beta-1a SubQ injection (Rebif) 13
Dimethyl fumarate (Tecfidera) 12
Interferon beta-1a IM Injection (Avonex) 11

Show all 12 treatments patients report switching from

Patients stopped taking Gilenya and switched to:

Treatment Patients
Dimethyl fumarate (Tecfidera) 10
Natalizumab (Tysabri) 6
Teriflunomide (Aubagio) 5
Glatiramer acetate (Copaxone) 2
Interferon beta-1a SubQ injection (Rebif) 2

Show all 7 treatments patients report switching to

Last updated:

26 patient evaluations for Gilenya

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

andreag
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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
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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
aubri328
44032 thumb
aubri328
Sex: F
Data Quality: 2 stars
Sensation: Mild
Overall: None
Cognition: none
Vision: none
Speech: none
Swallowing: none
Upper limb: none
Walking: none
I am: vg
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
Last updated:
Showing 3 of 26 patient evaluations for Gilenya