Idiopathic angioedema

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is idiopathic angioedema?

Idiopathic angioedema is a reaction similar to hives. It affects deeper layers of the skin, and the cause is unknown. Angioedema often appears around the eyes, cheeks and/or lips. Symptoms include, swelling of the skin, pain or warmth in the affected areas, and large welts.

Common symptoms reported by people with idiopathic angioedema

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.
Last updated:

Treatments taken by people for idiopathic angioedema

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

(Allegra)
Type
Prescription Drug
How many have tried
67
Tried for
idiopathic angioedema (6)
Treatment name(s)

(Zyrtec)
Type
Over the Counter Drug
How many have tried
121
Tried for
idiopathic angioedema (5)
Treatment name(s)

(Benadryl)
Type
Over the Counter Drug
How many have tried
99
Tried for
idiopathic angioedema (3)
Treatment name(s)

(Claritin)
Type
Over the Counter Drug
How many have tried
53
Tried for
idiopathic angioedema (2)
Treatment name(s)

(Chlor-Trimeton)
Type
Over the Counter Drug
How many have tried
17
Tried for
idiopathic angioedema (1)

Data from patients with idiopathic angioedema, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

Compare treatments taken by people with idiopathic angioedema

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

(Allegra)
Perceived effectiveness
for idiopathic angioedema (6 evaluations)
Side effects
grogginess tiredness 1 more
Total evaluations
6
Tried for
idiopathic angioedema (6)
Treatment name(s)

(Zyrtec)
Perceived effectiveness
for idiopathic angioedema (3 evaluations)
Side effects
facial swelling/puffiness
Total evaluations
3
Tried for
idiopathic angioedema (5)
Treatment name(s)

(Benadryl)
Perceived effectiveness
for idiopathic angioedema (2 evaluations)
Side effects
drowsy in morning excessive daytime sleepiness (somnolence)
Total evaluations
2
Tried for
idiopathic angioedema (3)
Treatment name(s)

(Claritin)
Perceived effectiveness
for idiopathic angioedema (1 evaluation)
Side effects
Total evaluations
1
Tried for
idiopathic angioedema (2)
Treatment name(s)

(Chlor-Trimeton)
Perceived effectiveness
for idiopathic angioedema (1 evaluation)
Side effects
increased appetite
Total evaluations
2
Tried for
idiopathic angioedema (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with idiopathic angioedema, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

Who has idiopathic angioedema on PatientsLikeMe?

  • 1 new patients joined this month
  • 168 say idiopathic angioedema is their primary condition

Age
Age Proportion # of patients
<20 9
20s 32
30s 38
40s 49
50s 48
60s 34
70+ 18
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 20
20-29 years 10
30-39 years 16
40-49 years 14
50-59 years 10
60-69 years 1
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 39
Female 195

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 82
Not Diagnosed 5

These charts show data from idiopathic angioedema patients who have completed their condition history
Last updated: