Clinicians should try to be supportive of patients who believe they have symptoms of ‘topical steroid withdrawal’, despite a lack of evidence for the condition, a new position statement advises.

Compiled by British dermatological groups, the circular aims to address rising steroid phobia, noting a rise in people putting off using topical steroids due to concerns about withdrawal, prompting a need for patient education.

The joint statement does acknowledge the existence of side effects, which, while poorly understood, are now receiving increased attention, in part because people are sharing their experiences on social media.

Terminology includes ‘topical steroid withdrawal’ (or TSW), ‘red skin syndrome’ and ‘topical steroid addiction’, according to the authors representing the the British Association of Dermatologists, National Eczema Society and the British Dermatological Nursing Group (link here).

It notes all topical steroid products in the UK have included a warning about TSW since 2021, after a review by UK regulators.

“Despite this, there remain many challenges to understanding and managing TSW,” they write.

“The term has been used to describe a range of issues, some of which are already recognised side effects of topical steroids.”

“The problem is widely discussed on social media and ‘#TSW’ has over 1.1 billion views on TikTok. However, the lack of a clear medical definition can make it difficult for healthcare professionals to communicate with people who are experiencing these reactions.”

“It also means that some people who think they have TSW may be experiencing another condition.”

Another problem is that there has been very little formal research on the topic, meaning current understanding is almost entirely based on patient reports and medical opinion, according to the authors.

The Australasian College of Dermatologists addressed the issue of steroid phobia in a 2017 position statement, which stated the “advice given by dermatologists to parents of children with eczema on the use of steroids is unfortunately frequently undermined by misinformation among the general community, pharmacists and general practitioners.”

Reported signs and symptoms

According to the latest update, while TSW is a term used to describe a wide range of issues, reported signs and symptoms include:

• Skin inflammation which develops in previously unaffected areas.
• Skin inflammation which extends beyond the area of the skin where the topical steroids were used.
• Symptoms that get worse after stopping topical steroids.
• The problem may take many months to resolve, and occasionally does not resolve fully.

But some people who suspect a TSW reaction, including those who have shared their experience on social media, have symptoms better explained by other conditions such as eczema relapse, erythema, contact dermatitis or skin infection, note the authors.

“It is important to emphasise that topical steroids can be used safely and effectively for eczema and many other skin conditions,” the authors conclude.

“Concerns about TSW should not put people off using topical steroids when they can help. It is important to treat eczema effectively to avoid suffering, and if topical steroids do not help, alternative medications may be available.”

They add: “Healthcare professionals should explain to people how to use topical steroids (considering the potency, amount, age of the patient, site on the skin of application and duration of use) and inform them of the risks if too much topical steroid is used.”

“Despite the lack of research on TSW, we would encourage healthcare professionals to be supportive of patients living with symptoms of TSW. Trying to find common ground and agree on practical plans for treatment will help patients who have concerns about the use of topical steroids.”

“It is important to offer alternatives to topical steroids for people who would otherwise stop using them. People with eczema, who have concerns about topical steroids should speak to a healthcare professional before taking any action.”

Brookes, et al. Topical steroid withdrawal: an emerging clinical problem. Clin Exp Dermatol. 2023. https://t.co/NTQbz4Ho29

“Many patients report dismissal by dermatology healthcare professionals, often driving them to seek help from unregulated online sources…”

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