Many AIP patients turn to cannabis for hard-to-treat symptoms

Acute Intermittent porphyria (AIP) is a rare autosomal dominant disorder of heme biosynthesis characterized by severe acute neurovisceral attacks. Despite available therapies many individuals continue to experience chronic residual symptoms that impair quality of life. Complementary and alternative medicines (CAMs) are widely used in other chronic conditions but their use among individuals with AIP is not well understood. Therefore, we explored patients' experiences through a cross-sectional, anonymous online survey assessing the use and perceived effectiveness of CAMs and cannabis among adults with AIP. Participants were recruited through the Longitudinal Study of the Porphyrias Consortium and a patient advocacy group listserv. Eighty-two individuals (87.8% female; mean age 43.9 ± 13.6 years) completed the survey. Most respondents (92.7%) had experienced acute attacks, and 68.3% reported chronic symptoms such as fatigue (71.4%), muscle weakness (60.7%), and nausea (55.4%). Self-help practices were widely adopted, including meditation (53.7%), relaxation techniques (57.3%), massage (50.0%), and yoga (47.6%), and rated helpful by most users. Chiropractors (17.1%) and acupuncturists (14.6%) were the most frequently visited CAM providers and often reported as being beneficial. Cannabis use was reported by 68.3% of respondents, primarily for symptom management, though perceived effects varied. CAM and cannabis use are prevalent in individuals with AIP to manage persistent symptoms. These findings highlight unmet needs in AIP management and emphasize the importance of further research to evaluate the safety, effectiveness, and integration of CAMs into patient-centered care strategies.