Mast cell activation syndrome

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What is mast cell activation syndrome?

Mast cell activation syndrome (MCAS) is a disorder characterized by episodes of symptoms related to hyper-reactivity of mast cells. Symptoms vary but may include hot flushing, stomach pain or nausea, lightheadness, heart palpitations, and more. Treatment for MCAS is not well established.

Common symptoms reported by people with mast cell activation syndrome

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with mast cell activation syndrome

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Zyrtec)
Type
Over the Counter Drug
How many have tried
5
Treatment name(s)

(Cromolyn ophthalmic)
Type
Prescription Drug
How many have tried
5
Treatment name(s)

(Allegra)
Type
Prescription Drug
How many have tried
5
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
4
Tried for
pain (4) depressed mood (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
4
Tried for
pain (4)
Treatment name(s)

(Singulair)
Type
Prescription Drug
How many have tried
4
Treatment name(s)
Type
Prescription Drug
How many have tried
3
Treatment name(s)

(Mobic)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)

(Zantac)
Type
Prescription Drug
How many have tried
3
Treatment name(s)

(Knee brace)
Type
Equipment
How many have tried
3
Tried for
pain (3)

Data from patients with mast cell activation syndrome, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with mast cell activation syndrome

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Zyrtec)
Perceived effectiveness
for mast cell activation syndrome (4 evaluations)
Side effects
sleepiness
Total evaluations
4
Treatment name(s)

(Cromolyn ophthalmic)
Perceived effectiveness
for mast cell activation syndrome (3 evaluations)
Side effects
diarrhea abdominal pain 5 more
Total evaluations
3
Treatment name(s)

(Allegra)
Perceived effectiveness
for mast cell activation syndrome (2 evaluations)
Side effects
joint pain
Total evaluations
3
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (2 evaluations)
Side effects
constipation heart palpitations
Total evaluations
2
Tried for
pain (4) depressed mood (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (1 evaluation)
Side effects
anxious mood headaches 2 more
Total evaluations
1
Tried for
pain (4)
Treatment name(s)

(Singulair)
Perceived effectiveness
for mast cell activation syndrome (2 evaluations)
Side effects
Total evaluations
2
Treatment name(s)
Perceived effectiveness
for mast cell activation syndrome (1 evaluation)
Side effects
Total evaluations
1
Treatment name(s)

(Mobic)
Perceived effectiveness
for pain (2 evaluations)
Side effects
dizziness
Total evaluations
2
Tried for
pain (3)
Treatment name(s)

(Zantac)
Perceived effectiveness
for mast cell activation syndrome (2 evaluations)
Side effects
flushing
Total evaluations
2
Treatment name(s)

(Knee brace)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (3)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with mast cell activation syndrome, who reported starting treatments within the last 5 years.
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Who has mast cell activation syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 5
20s 25
30s 26
40s 32
50s 34
60s 8
70+ 3
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 22
20-29 years 8
30-39 years 9
40-49 years 7
50-59 years 3
60-69 years 0
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 13
Female 124

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 52
Not Diagnosed 16

These charts show data from mast cell activation syndrome patients who have completed their condition history
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