Patients With Hidradenitis Suppurativa Often Turn To Alternative Medicine

Complementary and alternative medicine (CAM) use is common among patients with hidradenitis suppurativa (HS), more than half of whom report dissatisfaction with conventional treatment, researchers say.

"Patients with HS experience more negative impacts on quality of life when compared to other dermatologic conditions including atopic dermatitis and psoriasis," Kyla Price of the University of Illinois College of Medicine in Chicago told Reuters Health by email. They also are more likely to have delayed diagnoses due to misdiagnosis and psychosocial barriers, among other reasons, she said.

"As demonstrated in our study, many patients also experience frustration and inadequate response to conventional therapies," she said. "Therefore, we believe that many patients turn to CAM as a last resort, either in conjunction with, or in place of, conventional therapies."

To explore CAM use by HS patients, Price and colleagues distributed an anonymous questionnaire in three HS specialty clinics and in international social media support groups.

As reported in JAMA Dermatology, 303 respondents participated. The mean age was 38; 89% were women and 74%, white. Nearly all (97.7%) reported using conventional therapies. Treatments perceived to be most helpful were surgical excisions (57.9%); prescription pain medications (53.4%); and intralesional steroids (53.4%).

Half of participants who used biologics perceived them as helpful. That was true for less than one-third (28.1%) of oral medication users and 32.3% of topical antibiotic users. Overall, nearly half of respondents (49.7%) thought conventional therapy was not very successful.

While 84.2% reported using CAM, less than 70% disclosed their CAM use to a healthcare professional. CAM use did not differ based on demographics or disease characteristics. The most common reasons for its use were "frustration with conventional treatment" (63.9%) and desire to try "new" (51%) or "more 'natural'" (44.3%) treatments.

The most commonly used CAM products were turmeric/curcumin (59.6%), magnesium sulfate salt bath (59.2%), and zinc (54.9%). Marijuana (57.3%), magnesium sulfate bath (47.7%), and topical cannabidiol oil (44.8%) were perceived as most helpful.

Lifestyle practices for HS included dietary changes (90.2%), which 46.1% felt were beneficial, as well as smoking cessation (33.7%), and yoga or Pilates (22.7%). Most respondents who used CAM (65.1%) reported at least mild success, and 71.8% said they would recommend CAM to others.

Price said, "We encourage clinicians to ask patients about their CAM use (and) recommend considering CAM methods that can be potentially beneficial with minimal risks, such as magnesium sulfate baths or dietary changes."

Senior author Dr. Vivian Shi of the University of Arizona in Tucson added in an email to Reuters Health, "The crucial next step is to study how some of these CAM modalities used by HS patients work and how they can be strategically implemented alongside conventional therapies."

Dr. Fran Cook-Bolden of Advanced Dermatology PC in New York City said the findings "are very close to my day-to-day clinical experience."

"Both patients and providers have been frustrated and dissatisfied with the success (or lack thereof) achieved in getting (HS) under control or even to a point where the disease is not...having a negative (impact) on their lifestyle," she told Reuters Health by email. "This includes day-to-day employment, clothing decisions, grooming, personal comfort, and social interactions—especially intimate and professional/business relationships."

"CAM can provide increased therapeutic options for many diseases, especially those like HS, where the burden of the disease is high and the successful treatment options are limited," she said.

—Marilynn Larkin

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