Gilenya (fingolimod) Report for Patients Like You

What is Gilenya?

An example of Gilenya

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

Reasons and Perceived effectiveness
			Perceived Effectiveness
Purpose	# of patients	# of patients with evaluations	Major	Moderate	Slight	None	Can’t tell
MS (Multiple Sclerosis)	235	98
Diabetes Type 2	1	0
These side effects have beenprogrammed out and are no longer problem for me	1	1
Relapse MS (exacerbation)	1	1
Familial ALS	1	0

See all 207 patients currently taking Gilenya

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Reported Side Effects

Side effects as an overall problem

Severe	21
Moderate	11
Mild	22
None	49

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

See all 82 reported side effects ▼ See top 6 reported side effects ▲
Headaches	6	6
Heart palpitations	5	5
Fatigue	5	5
Elevated liver enzymes	4	4
Dizziness	4	4
Nausea	3	3
Macular Edema	3	3
Hospitalization	3	3
Back pain	3	3
Hospitalization	2	2
Hair loss	2	2
Stomach upset	2	2
Low white blood cell count (leukopenia)	2	2
Immune system weak	2	2
Heart rate low	2	2
Swelling in legs, feet and ankles	2	2
UTI symptoms	2	2
Blood pressure fluctuates	1	1
Panic attacks	1	1
Chest pressure	1	1
Heart arrhythmias	1	1
Pain in hips	1	1
Muscle fatigue	1	1
Pain in lower back	1	1
An overall crappy feeling all the time	1	1
Low blood sugar (hypoglycemia)	1	1
Heart palpitations then feel faint	1	1
Daytime sleepiness	1	1
Felt bad	1	1
Flu like symptoms	1	1
Nausea sometimes	1	1
Narcolepsy	1	1
Pain in legs	1	1
Slowed heart rate	1	1
Increased fatigue	1	1
Loss of appetite	1	1
Seizures	1	1
Migraine headaches	1	1
Blood pressure raised dangerously high	1	1
Diarrhea intermittent	1	1
Feeling sick	1	1
Heavy sensation in chest	1	1
Depression with suicidal thoughts	1	1
Cognitive decline	1	1
Unusually low pulse	1	1
Difficulty eating	1	1
Increased anxiety	1	1
Occasional low blood pressure	1	1
Occasional headaches	1	1
Very low white blood cell count	1	1
Abnormal EKG (electrocardiogram)	1	1
Upper respiratory infection	1	1
Acute bronchitis	1	1
Infection	1	1
Swelling in ankles	1	1
Lymphocytopenia (low lymphocytes)	1	1
Hypertension	1	1
Depressed mood	1	1
Macular Degeneration	1	1
Gastritis	1	1
Liver Impairment	1	1
Tension Headache	1	1
Primary Insomnia	1	1
Heart Murmur	1	1
Mild Depression	1	1
Renal Cell Cancer	1	1
Breathing difficulty	1	1
Difficulty speaking (dysarthria)	1	1
Weakness in legs	1	1
Racing heart feeling	1	1
Excessive daytime sleepiness (somnolence)	1	1
Vision loss	1	1
Balance problems	1	1
Tremor in hands	1	1
Brain fog	1	1
Vision difficulty	1	1
Weight loss	1	1
Blurry vision	1	1
Rash or skin problems	1	1
Swallowing difficulty (dysphagia)	1	1
Weakness in hands	1	1
Elevated blood pressure	1	1

Reported Dosages

Frequently reported dosages based on patients currently taking Gilenya. See all 23 dosages ►

0.05 mg daily	0.5 mg daily	0.5 g daily	0.5 mcg daily	1 mg daily	1 capsule(s) daily	1 cap(s) daily	5 mg daily	10 mg daily	50 mg daily
15	130	2	2	10	2	18	10	2	3

Reported Stop Reasons

Why Patients Stopped Taking Gilenya (multiple reasons could be selected)
Reason	# Patients	Percentage of patients
Doctor's advice	24
Side effects too severe	23
Did not seem to work	18
Other	12
Personal research	3
Expense	1
Not indicated	1

See all 51 patients who’ve stopped taking Gilenya

Reported Duration See details about how long patients take this treatment ▼ Reported Duration Hide details ▲

Currently Taking Gilenya

A bar graph

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
0	2	7	13	32	25

Stopped Taking Gilenya

A bar graph

0-1 month	1-3 months	3-6 months	6 months-1year	1-2 years	2 years or more
10	10	4	15	5	6

Reported Adherence, Burden & Cost See details from patient evaluations ▼

Adherence

Taking treatment as prescribed

Adherence of Gilenya

Always	96	93%
Usually	2	2%
Sometimes	1	1%
Never	4	4%

Burden

Difficulty being on treatment

Burden of Gilenya

Very	3	3%
Somewhat	3	3%
A little	3	3%
Not at all	94	91%

Cost

Paid out of pocket

Cost of Gilenya

$200+	8	9%
$100-199	9	11%
$50-99	7	8%
$25-49	14	16%
< $25	47	55%

Patient Evaluations

Tigertroll

Sex: F

Data Quality: 2 stars

Sensation: Moderate

Overall: Mild

Cognition: none

Vision: none

Speech: none

Swallowing: mild

Upper limb: moderate

Walking: moderate

I am: g

I have:
MS
Tigertroll

0.5 mg daily

since Jul 10, 2012
Perceived effectiveness Major for MS (Multiple Sclerosis)
Side Effects None
Advice/Tips I've had just one flare-up that lasted more than a week (felt like spiders crawling on me) in over a year on Gilenya. This is a HUGE improvement for me! Hist... See full evaluation

arthurj

Sex: M

Data Quality: 3 stars

Sensation: Moderate

Overall: Mild

Cognition: moderate

Vision: moderate

Speech: none

Swallowing: none

Upper limb: moderate

Walking: moderate

I am: b

I have:
MS
arthurj

0.5 mg daily

since Jul 09, 2012
Perceived effectiveness ?Can't tell for MS (Multiple Sclerosis)
Side Effects None
See full evaluation

moogie16

Sex: F

Data Quality: 2 stars

Sensation: Moderate

Overall: Moderate

Cognition: moderate

Vision: moderate

Speech: moderate

Swallowing: mild

Upper limb: moderate

Walking: moderate

I am: vb

I have:
MS
moogie16

since May 24, 2012
Perceived effectiveness Moderate for MS (Multiple Sclerosis)
Side Effects Severe
Advice/Tips I am able to walk better, have better gait, less spasicity in my legs. I believe the problem is drug interaction with Synthroid. We'll soon find out. See full evaluation