Adults with AIP report broad use of cannabis and alternative care

Many adults with acute intermittent porphyria (AIP) reported using cannabis and complementary and alternative care, including chiropractic and acupuncture, for symptoms or general well-being, a study found. However, more research is needed to determine whether these approaches are safe and effective.

The U.S.-based study, “Complementary and alternative medicines and cannabis use among individuals with acute intermittent porphyria,” was published in Molecular Genetics and Metabolism.

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Porphyria comprises a group of genetic disorders in which the body cannot properly produce heme, a part of hemoglobin, the protein that carries oxygen in red blood cells. People with porphyria can experience sudden attacks of symptoms, including intense abdominal pain and nervous system problems, called neurovisceral attacks.

Although treatments are available, long-lasting symptoms can persist and reduce quality of life. The study examined how adults with diagnosed or self-reported AIP used cannabis and complementary and alternative medicine, which includes products and practices outside standard medical care, for symptom management and general well-being.

The study recruited 82 participants from the Longitudinal Study of the Porphyrias Consortium (NCT01561157) and a patient advocacy group. Participants responded to an anonymous online survey about which treatments they used and how well they thought those treatments worked. Most participants (87.8%) were women, and the average age was 43.9 years.

Nearly all participants (92.7%) had experienced at least one acute attack of AIP, with attacks beginning at an average age of 24.4 years. Among those who had experienced acute attacks, 78.9% were still experiencing them when the survey was completed. Among that same group, nearly two-thirds (63.2%) reported recurrent attacks, defined as four or more per year.

Persistent symptoms were common, with over two-thirds of participants (68.3%) reporting a history of chronic symptoms beginning at an average age of 30.2 years. The most common symptoms were fatigue (71.4%), muscle weakness (60.7%), other pain (58.9%), and nausea (55.4%). Most participants who reported chronic symptoms were still experiencing them when surveyed.

More than two-thirds of participants (68.3%) reported having tried cannabis in some form. Many used it to manage AIP symptoms, while others reported using it for both symptom relief and recreational purposes. Most reported using products containing tetrahydrocannabinol (THC), the main intoxicating compound in cannabis, although some reported using only cannabidiol (CBD), a non-intoxicating cannabis compound.

Cannabis experiences and symptom burden varied

Participants who had used cannabis generally reported a higher symptom burden. Compared with those who had not used cannabis, a larger proportion were still experiencing acute attacks and had experienced chronic symptoms. A questionnaire indicated low overall cannabis use, and because this was a survey, it is unclear whether cannabis actually eased symptoms.

During the previous year, some participants (17.1%) had visited a chiropractor, who treats problems involving muscles and joints using manual techniques, and about as many (14.6%) had visited an acupuncturist, who inserts very thin needles into specific points on the body. Most of those who visited chiropractors or acupuncturists rated them as very helpful. Other participants visited massage therapists, spiritual healers, homeopaths, and herbalists.

Most participants (90.2%) had also seen a doctor during the previous year. Of those participants, 43.2% said long-term AIP symptoms were the reason for their most recent visit. Some doctors provided complementary and alternative treatments such as acupuncture, homeopathy, spiritual healing, or hypnosis. Most of these treatments were rated as somewhat or very helpful.

More than half of participants (56.1%) used herbs or dietary supplements. The most common products were multivitamins, vitamin D, vitamin B12, and magnesium. Self-help practices were also common, with more than half of participants using relaxation techniques (57.3%) or meditation (53.7%), mainly to help control persistent symptoms or improve their general well-being.

Overall, “these findings highlight unmet needs in AIP management and emphasize the importance of further research to evaluate the safety, effectiveness, and integration of [complementary and alternative medicine] into patient-centered care strategies,” the researchers concluded.