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Acute porphyria

Porphyria hepatica acuta · Akutní porfyrie

What it is

An inherited block in making haem; drugs, alcohol, fasting or hormones trigger attacks of severe abdominal pain, nerve damage and dark urine.

Symptoms & signs

  • Severe abdominal pain
  • vomiting and constipation
  • dark or reddish urine
  • fast heart and high blood pressure
  • anxiety, confusion, weakness

🚩 Get help if…

  • call 112 / 911 now Severe belly pain with weakness of arms or legs
  • call 112 / 911 now Fits, confusion or trouble breathing
  • see a doctor soon Dark red or brown urine with belly pain
  • see a doctor soon Attack after a new medicine, fasting or alcohol

Where it strikes

Medical treatment

  • Urine porphobilinogen
  • haem arginate infusions
  • givosiran (an RNA drug) to prevent attacks
  • glucose, and pain relief with safe drugs
  • avoid triggers

Natural & lifestyle

  • Regular carbohydrate, no fasting or crash diets
  • no alcohol
  • check every medicine against a safe list

Emerging & experimental

  • Liver-targeted gene therapy
  • liver transplant in severe cases

Alternative, off-label & anecdotal

Approaches used outside the guidelines, with what their supporters report and what testing has found so far.

  • High carbohydrate intake — the standard first step; supported in practice early / small studies
  • Herbal remedies — many are unsafe triggers not confirmed in trials
  • Cannabis for pain — untested; some cannabinoids may be unsafe anecdotal / traditional

ICD codes