Prognosis
Patients with latent AIP
Approximately 80% of heterozygotes remain asymptomatic and never become ill.[6] For these carriers, precautions to avoid harmful factors are advised. Knowledge that they are carriers enables prompt diagnosis and treatment if porphyric symptoms develop.
Patients with clinically expressed AIP
The mortality from acute attacks is low, and most patients will recover completely, especially if the diagnosis and treatment are prompt. Advanced motor neuropathy may recover completely over months or several years, but there may be residual weakness or neuropathic pain.
Most patients who develop symptoms have only one or a few attacks during their lifetime. However, a few patients have many attacks even if they avoid harmful factors. Dietary consultation is recommended to detect unapparent dietary indiscretions. Those who respond to preventive interventions, such as a gonadotropin-releasing hormone analog for frequent cyclic attacks confined to the luteal phase of the cycle, or givosiran or prophylactic hemin administration weekly or biweekly for noncyclic attacks, may also have a good prognosis.[10][29] Some patients with frequent attacks develop chronic, unremitting symptoms.
Chronic pain
Neuropathic pain becomes chronic in a few patients, especially after many acute exacerbations. These patients may require long-term pain management, including narcotic analgesics. They are prone to depression and suicide, and should be actively managed to prevent such outcomes.[36]
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