Painful skin and trouble sleeping are among the problems reported when tapering cortisone cream for atopic eczema, according to findings from a new survey study. Many survey respondents said they consider the issues to be caused by cortisone dependence.
The study, headed by researchers at the University of Gothenburg in Sweden, was published in Acta Dermato-Venereologica (Jan. 3, 2025; 105:adv40187).
In a press release, the authors note that while topical steroid withdrawal (TSW) is not an established diagnosis, the name has become commonplace on social media for describing skin has become dependent on cortisone. The phenomenon is commonly described as extremely red and painful skin arising when cortisone cream treatment is tapered or stopped.
For this study, a national research group in Sweden, headed by Sahlgrenska Academy at the University of Gothenburg, surveyed a large population, asking them to provide a detailed account of what they consider to be TSW.
The study targeted adults with atopic eczema, a group that often uses cortisone cream, who also identified as experiencing TSW. Researchers circulated an anonymous questionnaire in Swedish in social media forums, with the option for participants to share a link to invite other potential participants. Approximately 100 people aged 18 to 39, mostly women, answered the questionnaire.
“We wanted to gain more knowledge about how those who identify as suffering from TSW define the phenomenon and which symptoms they describe,” said Mikael Alsterholm, PhD, in the release. Dr. Alsterholm is a researcher at the University of Gothenburg and a senior consultant in dermatology and venereology at Sahlgrenska University Hospital.
The survey findings show variations in how the participants defined TSW. Most defined it as dependence on cortisone, with symptoms arising when tapering or stopping its use, although many others also defined TSW as a reaction to cortisone during its use.
It was also common for respondents to define TSW based on the symptoms seen in the skin, such as redness and pain. While the symptoms described varied, they were mainly similar to those seen in an atopic eczema exacerbation.
In addition to the skin becoming red, dry, and blistered—mainly on the face, neck, torso, and arms—the participants also described sleep problems due to itching as well as signs of anxiety and depression.
A majority of the participants described concurrent symptoms of both atopic eczema and TSW. They most frequently cited cortisone cream as the triggering factor, while some cited cortisone tablets and a few cortisone-free treatments.
“It's important that healthcare professionals and researchers are involved in the discussion on TSW and contribute science-based knowledge where possible. 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,” said Dr. Alsterholm.
“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. 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,” he said.
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