Secondary prevention

To prevent attacks, known heterozygotes should avoid harmful drugs and other triggers (e.g., nutritional alterations) whenever possible.[16]​[23] British Porphyria Association Opens in new window American Porphyria Foundation Opens in new window European Porphyria Network Opens in new window Generally, a well-balanced diet containing enough calories to maintain body weight and 60% to 70% of total calories as carbohydrate is recommended. 

Cyclic attacks in women can be prevented by giving treatment with a gonadotrophin-releasing hormone (GnRH) analogue, which should be started during days 1 to 3 of the menstrual cycle.[10] With long-term use, add-back oestrogen in the form of a low-dose skin patch helps prevent bone loss.

Haemin infusions once or twice weekly and givosiran (an interfering RNA therapeutic targeted to hepatic delta-aminolevulinic acid synthase) can prevent cyclic or non-cyclic attacks.[6][26][23][25]

Medical alert bracelets and wallet cards can remind patients and medical personnel of the diagnosis when other illnesses develop and during emergencies. This helps avoid treatment with medications that may exacerbate acute porphyrias.

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