Acute intermittent porphyria

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What is acute intermittent porphyria?

Acute intermittent porphyria is a rare genetic disorder that primarily affects the nervous system. It is characterized by intermittent acute episodes of abdominal, mental and neurological symptoms that appear quickly and usually last a short time.

Common symptoms reported by people with acute intermittent porphyria

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 acute intermittent porphyria

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

(Tylenol)
Type
Over the Counter Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(BuTrans patch)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Tagamet)
Type
Prescription Drug
How many have tried
1
Treatment name(s)

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

(Ativan)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)

Data from patients with acute intermittent porphyria, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with acute intermittent porphyria

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

(Tylenol)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

(BuTrans patch)
Perceived effectiveness
for pain (2 evaluations)
Side effects
lethargy
Total evaluations
2
Tried for
pain (1)
Treatment name(s)

(Tagamet)
Perceived effectiveness
No evaluations
Side effects
Total evaluations
1
Treatment name(s)

(Celexa)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood (1)
Treatment name(s)

(Ativan)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
drowsiness
Total evaluations
1
Tried for
anxious mood (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with acute intermittent porphyria, who reported starting treatments within the last 5 years.
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Who has acute intermittent porphyria on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 3
30s 6
40s 16
50s 15
60s 9
70+ 5
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 16
20-29 years 7
30-39 years 4
40-49 years 1
50-59 years 2
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 10
Female 46

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 29
Not Diagnosed 4

These charts show data from acute intermittent porphyria patients who have completed their condition history
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