Hereditary coproporphyria

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What is hereditary coproporphyria?

Hereditary coproporphyria (HCP) is one of the acute hepatic porphyria caused by a defect in the enzyme coproporphyrinogen III oxidase. Acute attacks most often result in neurovisceral symptoms that may include abdominal pain, constipation, and weakness. Less commonly, skin changes may occur.

Common symptoms reported by people with hereditary coproporphyria

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 hereditary coproporphyria

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

(Lexapro)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1) depressed mood (1)
Type
Physical Therapy
How many have tried
1
Treatment name(s)
Type
Supplement
How many have tried
1
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1) depressed mood (1)

Data from patients with hereditary coproporphyria, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with hereditary coproporphyria

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

(Lexapro)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
fatigue increased anxiety
Total evaluations
1
Tried for
anxious mood (1) depressed mood (1)
Perceived effectiveness
for hereditary coproporphyria (1 evaluation)
Side effects
Total evaluations
1
Treatment name(s)
Perceived effectiveness
for hereditary coproporphyria (1 evaluation)
Side effects
Total evaluations
1
Treatment name(s)

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

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


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

Distribution of sex

Sex
Sex Proportion # of patients
Male 3
Female 13

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 7
Not Diagnosed 3

These charts show data from hereditary coproporphyria patients who have completed their condition history
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