Self-Reported Symptoms of Topical Steroid Withdrawal Identified in Study of Atopic Dermatitis
There are no diagnostic criteria for topical steroid withdrawal but patients describe and discuss it on social media. Study authors tapped a deep source of information.
The most frequently self-reported symptoms of topical steroid withdrawal (TSW) among respondents with atopic dermatitis (AD) to an online survey were pruritis, sleep disturbance, and anxiety and depression, according to a study published online January 3 in Acta Dermato-Venereologica. Other self-reported manifestations of the adverse reaction to tapering or cessation of topical glucocorticoid (TGC) treatment for AD included erythema, desquamation, dryness, and oozing affecting the face, neck, and upper extremities, Swedish researchers reported.1
There is no defined pathophysiologic mechanism for the reaction, no diagnostic criteria, and very little research conducted to identify a dependency of skin on cortisone, according to the Swedish national research group, headed by Sahlgrenska Academy at the University of Gothenburg. But while there is little scientific support and TSW is not officially recognized by health care professionals, the term has become commonplace on social media, the authors wrote, with some conversations raising concerns among the population with AD about the safety of TGCs, sometimes referred to as steroid phobia.1
Individuals with symptoms that they attribute to TSW have experienced dismissive responses to expressed concerns about use of TGCs. “Research is needed to prevent increasing discordance between patient concerns and health care [professional] engagement,” the investigators noted. "We wanted to gain more knowledge about how those who identify as suffering from [topical steroid withdrawal] define the phenomenon and which symptoms they describe," first author Mikael Alsterholm, PhD, a researcher at the University of Gothenburg and senior consultant in dermatology and venereology at Sahlgrenska University Hospital, said in a university statement.2
The observational cross-sectional study was initiated with a questionnaire for participants aged 18 years and older posted to a Swedish TSW-themed Facebook group over a 4-week period in 2023. Participants had reported both AD and TSW; 98 users accessed the questionnaire and 82 completed it, according to the study.1
The majority of respondents were women (95%), aged 18 to 39 years old (74%), and had self-diagnosed with TSW (84%). Participants who reported never having contacted a health care professional about symptoms they attributed to TSW (n = 37) reported fear that its existence would not be recognized by medical staff and/or that staff would not have sufficient knowledge to manage the condition.
The researchers reported variations in participant definitions of TSW, the most common being dependence on cortisone leading to symptoms upon decreasing or stopping treatment but many also defined the term as a reaction to cortisone during its use. Most (60%) reported current symptoms of AD and TSW.1
More than half (60%) of the respondents reported recurring episodes of manifestations attributed to TSW. The personal trigger factor for symptoms attributed to TSW was believed by 93% of respondents to be TGCs but 33% also identified oral glucocorticoids as the trigger. TGCs were currently used by 21%. Self-reported manifestations of TSW are similar to those of AD but participants appeared able to distinguish between them.
“The reactions following discontinuation were interpreted as a sign of withdrawal of glucocorticoids, distinct from a flare of the underlying AD. These symptoms were seen as dependency – not in the sense of needing treatment, but in the sense of induced addiction to a prescribed substance that resulted in a new set of symptoms, perhaps worse than the initial ailment,” Alsterholm and colleagues wrote in their discussion.1
TSW is now a diagnosis of exclusion, to be made only after careful ruling out of known causes for adverse reactions to TGCs, the authors noted. “Cortisone cream is an effective and safe treatment for most people, and at present there's no support for avoiding its use for fear of the types of symptoms described in the context of TSW," Alsterholm said.2
"At the same time, there's a patient group with different experiences, expressed as TSW, and their symptoms and the potential causes need to be investigated by means of both research and practical healthcare,” Alstherholm said in the university release. "To do this, we first need to define TSW. While we understand that this is complicated, we hope that this study can help establish such a definition."2
