Acute porphyrias

Great care must be taken when prescribing for patients with acute porphyria, since certain drugs can induce acute porphyric crises.

The BNF contains some guidance on acute porphyrias, however for specialist clinical advice there are two centres designated by the Advisory Group for National Specialised Services (AGNSS) that provide a national service for patients with active acute porphyria (acute intermittent porphyria, variegate porphyria, hereditary coproporphyria).

• Cardiff and Vale University Health Board National Acute Porphyria Service
• King's College Hospital National Acute Porphyria Service

Please refer to Haematologists or Medicines Information for advice on prescribing for patients with acute porphyria.

Givosiran

• Solution for injection 189mg/ml

Notes

1. NICE HST16: Givosiran (Givlaari) is recommended as an option for treating acute hepatic porphyria (AHP) in adults and young people aged 12 and older (November 2021), only if:
   1. they have clinically confirmed severe recurrent attacks (4 attacks or more within 12 months) and
   2. the company provides it according to the commercial arrangement.

Phototoxicity prevention

For sunscreen preparations please see here.

Afamelanotide

• NICE HST27: Afamelanotide (Scenesse) is not recommended, within its marketing authorisation, for preventing phototoxicity in adults with erythropoietic protoporphyria (EPP) (July 2023).