Patients with hydradenitis suppurativa often turn to alternative medicine .

Alternative medicine



NEW YORK (Reuters Health) – The use of complementary and alternative medicine (CAM) is common among patients with suppurative hydradenitis (HS), more than half of whom report dissatisfaction with conventional treatment, researchers say.
"Patients with HS experience more negative impacts on quality of life compared to other dermatological conditions, such as atopic dermatitis and psoriasis," Kyla Price, of the University of Illinois School of Medicine, told Reuters Health. In Chicago. They are also more likely to have delayed diagnoses due to misdiagnoses and psychosocial barriers, among other reasons, he said.

"As demonstrated in our study, many patients also experience frustration and inadequate response to conventional therapies," he said. "Therefore, we believe that many patients resort to CAM as a last resort, either together or instead of conventional therapies."
To explore the use of CAM by patients with HS, Price and his colleagues distributed an anonymous questionnaire in three specialized clinics in HS and in international social media support groups.

As reported in JAMA Dermatology, 303 respondents participated. The average age was 38 years; 89% were women and 74% were white. Almost all (97.7%) reported using conventional therapies. The treatments perceived as the most useful were surgical excisions (57.9%); prescription medications for pain (53.4%); and intralesional steroids (53.4%).

Half of the participants who used biological products perceived them as useful. That was true for less than a third (28.1%) of oral medication users and 32.3% of topical antibiotic users. Overall, almost half of respondents (49.7%) thought that conventional therapy was not very successful.
While 84.2% reported that they used CAM, less than 70% disclosed their use of CAM to a health professional. The use of CAM did not differ according to demography or disease characteristics. The most common reasons for its use were "frustration with conventional treatment" (63.9%) and the desire to try "new" (51%) or "more & # 39; natural & # 39;" treatments. (44.3%).
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 the most useful.

Lifestyle practices for HS included dietary changes (90.2%), which 46.1% considered beneficial, as well as quitting smoking (33.7%) and yoga or Pilates (22.7%). The majority of 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 doctors to ask patients about their use of CAM (and) we recommend considering CAM methods that can be potentially beneficial with minimal risks, such as magnesium sulfate baths or dietary changes."
Lead author Dr. Vivian Shi of the University of Arizona in Tucson added in an email to Reuters Health: "The next crucial step is to study how some of these CAM modalities used by patients with HS work and how can be strategically implemented along with conventional therapies. "
Dr. Fran Cook-Bolden, of Advanced Dermatology PC in New York City, said the findings "are very close to my daily clinical experience."

"Both patients and providers have been frustrated and dissatisfied with the success (or lack thereof) achieved by controlling (HS) or even to a point where the disease is not … is having a negative impact on their Lifestyle". she told Reuters Health by email. "This includes daily employment, dress decisions, personal grooming, personal comfort and social interactions, especially intimate and professional / commercial relationships."

"CAM can provide greater therapeutic options for many diseases, especially those such as HS, where the disease burden is high and successful treatment options are limited," he said.

SOURCE: JAMA Dermatology, online January 29, 2020.