Napos Database

Acute Porphyria Drugs

AVOID unless benefit strongly outweighs consequences of an acute attack
(e.g. treating potentially life limiting conditions, conditions which heavily impact on quality of life, end of life care etc. where no safe alternative is available)
In a life threatening emergency, do not withhold any critically required medication. In an emergency do not delay, however if time permits, find a safe alternative.
Assess risk vs. benefit
Highest risk in patients with
  • Recurrent attacks
  • Recent attacks
  • Other triggers present, e.g. fasting, alcohol, multiple medications
  • Females of reproductive age
Lower risk in patients with
  • Asymptomatic acute porphyria
  • Latent acute porphyria
(Note that low risk doesn't mean no risk)
Expected benefit from treatment?
If benefit strongly outweighs risk, treat but take precautions.
Counsel patient
  • On risk vs. benefits
  • To avoid other triggers: fasting, alcohol, recreational drugs.
  • Regarding acute attack symptoms like severe abdominal/back/leg pain and, possibly behavioural change; this may be accompanied by nausea, vomiting, constipation, but these are also known adverse drug effects.
  • On actions to take if symptoms were to develop.
Prepare
  • Measure baseline urine porphobilinogen (PBG), since baseline concentrations may be elevated.
  • Establish availability of haemin to treat a potential future attack.
  • Inform all healthcare professionals involved in patient’s care.
Manage
  • If symptoms develop, stop drug and repeat urine PBG urgently, and compare to baseline for interpretation.
  • Manage confirmed acute attacks.
In cooperation with Ipnet
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