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Topical steroid withdrawal syndrome: time to bridge the gap

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Since their introduction in the 1950s, topical corticosteroids (TCSs) have improved the lives of many dermatology patients. In 2020–2021, over 10 5 million tubes of TCSs were prescribed in England… Click to show full abstract

Since their introduction in the 1950s, topical corticosteroids (TCSs) have improved the lives of many dermatology patients. In 2020–2021, over 10 5 million tubes of TCSs were prescribed in England alone and in addition, many more were purchased over the counter. Yet in 2021 the Medicines and Healthcare products Regulatory Agency issued a new warning on TCSs, advising patients to seek medical advice if skin burning or redness occurs after discontinuing treatment. What has led to this new caution surrounding one of dermatology’s most relied resources? There is growing public awareness and concern about Topical Steroid Withdrawal Syndrome (TSWS), also known as Topical Steroid Addiction or Red Skin Syndrome. A systematic review by Hwang and Lio 3 describes TSWS as a distinct clinical entity of skin burning and erythema, which occurs most frequently in women, sometimes in under 18-year-olds, after discontinuation of prolonged application of moderate-to-high potency TCSs. This review also highlights the poor quality of research that has been completed in TSWS. A recent study found an almost six times increase in discussion of #topicalsteroidwithdrawal on the social media platform Instagram between 2020 and 2016, with >618 354 mentions in a 12-month period. Many sufferers believe that TCSs caused their problem and must be avoided at all costs. Patient support groups are calling for earlier recognition, advocacy and research into TSWS. In 2021, the British Association of Dermatologists and National Eczema Society issued a joint statement on TSWS recognizing that patients may develop a new rash after discontinuing TCSs, and suggesting that this represents a heterogeneous group of conditions rather than one single entity. The lack of a clear definition for TSWS has unfortunately led to failures of communication between doctors and patients. Cutaneous atrophy, acne, rosacea, perioral dermatitis and contact allergy are well recognized adverse effects of topical steroids. At the same time as causing these problems the anti-inflammatory TCS suppresses them, so they may become worse when the TCS is discontinued. The original condition for which the TCS was prescribed may also flare, and its appearance might have changed with TCS use. Prolonged excessive use of potent TCSs can result in adrenal suppression, perhaps explaining the profound weakness described by some sufferers. All these differential diagnoses must be considered when evaluating a case of TSWS. However, the intense erythema and burning of TSWS does appear distinct from these entities, specific to TSWS and more prolonged than can be explained by the rebound vasodilation that occurs after discontinuing TCSs. Failure to address the growing discordance between patient concerns and healthcare professionals’ response to TSWS alienates dermatology patients, discourages treatment adherence, and increases steroid phobia. Treatable conditions remain untreated and vulnerable individuals may seek potentially inappropriate alternative therapy. The prevailing view among those suffering from TSWS is that the only treatment is immediate withdrawal of TCS. It is deeply concerning to read harrowing accounts of patients ‘going cold turkey’ when treatments other than TCSs could alleviate their condition. These should be tailored to the underlying condition, and for eczema sufferers could include other topical, systemic and psychological modalities. We can begin to address TSWS with our patients by encouraging open discussion. It requires patience, empathy and sensitivity to obtain a clear medication history and description of symptoms from patients who may have been alarmed by accounts of TSWS on the internet, exposed to misinformation and sensitized by the dismissive response of previous healthcare professionals. A careful analysis of symptoms and signs should lead to a clear differential diagnosis. This is likely to include rebound of the underlying condition and known adverse reactions to TCSs, but must also document features of TSWS that do not fit our existing diagnostic categories. Specific investigations are required if contact allergy or even adrenal suppression are suspected. Finally, an appropriate treatment approach must be developed jointly with the patient, ideally avoiding further use of TCS. Looking forwards, dermatologists can advocate and develop research to better understand the nature of TSWS and what population it is prevalent in. Observational studies leading to consensus on a clearer disease definition can be followed by epidemiological studies and investigation of the underlying pathophysiology. We also need to review critically the longterm safety data on TCSs, clarify optimal usage in terms of potency, frequency, duration and area of TCS application, and communicate this information more clearly and consistently to patients and caregivers than is the case at present. Above all, we must be open minded and listen to patient voices, understand their concerns and learn from them.

Keywords: withdrawal; topical steroid; dermatology; tsws; tcss

Journal Title: British Journal of Dermatology
Year Published: 2022

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