What do we know about topical steroid withdrawal syndrome?

Topical corticosteroids have been the mainstay of treatment for many skin disorders, including eczema, for more than 60 years. There is lots of evidence that topical corticosteroids can help to improve symptoms, but they can also cause side effects.

What is topical steroid withdrawal syndrome?

Topical Steroid Withdrawal Syndrome (TSWS) is a debilitating skin condition linked with discontinuing topical corticosteroids after prolonged use. People with TSWS tend to report using an increased quantity and potency of topical steroids over months and years to control their condition. As a result they can go on to experience more severe skin symptoms when they stop using the treatments. These symptoms may subside over months or years.

Symptoms of TSWS before treatment is stopped include rebound redness between applications and intense burning, itching and stinging.  After withdrawing from treatment, symptoms include oozing, swelling, itching, burning and flaking.

TSWS is controversial within the medical community; there are no clear or accepted diagnostic criteria and for many clinicians it can be challenging to distinguish from other conditions. Patients often report feeling ignored and dismissed by their doctors and many turn to social media to share their experiences. There are several extensive online communities providing information and support to patients with topical steroid withdrawal including ITSAN and Scratch That UK.

What did we do?

We brought together all the available evidence on TSWS in an interactive evidence and gap map in order to increase the accessibility of existing evidence (including social media posts and blogs from people living with the condition) for the medical and dermatological communities as well as for the patient communities and organisations. It was an important resource to guide both researchers and clinicians in the prioritisation of research topics for further research.

This map identified areas of evidence and gaps in evidence across research topics specific to TSWS from the first known mention in the research literature in 1968 to the present. We searched for evidence in electronic databases, on websites and on Instagram, Reddit and blog sites. The map displayed the evidence as a matrix by year of publication and research topic. We worked closely with a patient living with TSWS throughout the project.

What conclusions were drawn?

The research on Topical Steroid Withdrawal Syndrome is growing, but there are still some key areas that need more attention. We need more long-term studies to understand the safety of using topical corticosteroids over time and to avoid dependency. There’s also a need for research that looks at what it’s really like to live with TSWS and how patients experience their healing process. The inclusion of looking at social media as a new and developing way of gathering evidence, where people talk about their experiences with TSWS, has highlighted the increasing presence of #topicalsteriodwithdrawal. This can give us better insights into the patient’s perspective and help improve care for those affected by TSWS.