Complementary and alternative medicines and cannabis use among individuals with erythropoietic protoporphyria

Erythropoietic Protoporphyria (EPP) and X-Linked Protoporphyria (XLP) are rare, inherited disorders that present with severe cutaneous phototoxicity. Pain from phototoxic reactions does not respond to analgesics, and there is a need to identify therapies to address EPP-pain. Anecdotal reports from individuals with EPP indicate that cannabis may alleviate symptoms during phototoxic reactions. These reports warrant further systematic investigation. Therefore, this study aimed to explore how patients with EPP utilize cannabis and complementary and alternative medicines (CAM).

A cross-sectional survey assessing the use of CAMs and cannabis in individuals with EPP and XLP was conducted. The survey included demographics, EPP/XLP symptoms, CAM use (the International CAM Questionnaire and Daily Session (I-CAM-Q)), and cannabis use (the Frequency, Age of Onset and Quantity of Cannabis Use Inventory (DFAQ-CU)).

A total of 149 participants completed the survey. More than half of participants (62.9 %, 78/124) reported having used cannabis, either currently or in the past. Among the cannabis users, 12.9 % (9/70) reported using it only for EPP symptoms, 34.2 % (24/70) only recreationally, and 47.4 % (37/70) for both reasons. Individuals reported that cannabis mitigated anxieties around symptoms, though it was not perceived to directly reduce EPP-pain. Participants with more severe symptoms reported higher cannabis use. Few participants reported seeing a CAM provider for symptoms related to EPP, with most seeing providers to improve general well-being or for other reasons not related to EPP. Additionally, 76.0 % (89/117) of participants used self-help practices, though generally not for their EPP symptoms.

Overall, findings from this study suggest that cannabis may be impactful on secondary effects of EPP symptoms. Also, that individuals with EPP primarily used other CAMs to improve general well-being rather than as treatment for EPP-related symptoms or pain. Given the limited treatment options for EPP-pain and the findings here, additional research is needed to determine the effectiveness of cannabis on EPP symptoms.