A recent study from the University of Gothenburg indicates that individuals tapering off cortisone cream for atopic eczema commonly face painful skin and sleep disturbances. Many of these individuals attribute their struggles to dependence on cortisone.
Topical steroid withdrawal (TSW) refers to the severe redness and pain in the skin that can occur when someone reduces or stops using cortisone cream.
Although TSW is not officially recognized as a medical diagnosis, the term implies that the skin has developed a dependence on cortisone. Research to explore the mechanisms of this dependency is still lacking, leading to limited scientific backing. Nevertheless, the concept has gained traction on social media, increasing patient worries regarding the safety of cortisone creams.
A national research team in Sweden, led by the Sahlgrenska Academy at the University of Gothenburg, has performed the first comprehensive study involving a larger participant group to articulate what they perceive as TSW.
Questionnaire via social media
The study focused on adults suffering from atopic eczema, a demographic that frequently uses cortisone creams and identifies as experiencing TSW. An anonymous questionnaire was distributed in Swedish on social media platforms, allowing participants to share the link for recruitment. Nearly one hundred individuals aged 18-39 participated, with a significant number being women.
“Our aim was to deepen our understanding of how those who describe themselves as suffering from TSW perceive this condition and the symptoms they experience,” states Mikael Alsterholm, a researcher from the University of Gothenburg and a senior consultant in dermatology at Sahlgrenska University Hospital.
The findings, published in the journal Acta Dermato-Venereologica, reveal diverse definitions of TSW among participants. The predominant view was that TSW signifies a reliance on cortisone, leading to symptoms when decreasing or halting its use. However, many participants also considered TSW to be a reaction to cortisone that manifests even while using it.
Furthermore, participants frequently defined TSW based on visible symptoms such as redness and pain. Though the symptoms varied, most resembled those of a flare-up of atopic eczema.
Beyond skin issues like redness, dryness, and blisters—commonly appearing on the face, neck, torso, and arms—participants also reported sleep disturbances caused by itching, along with feelings of anxiety and depression.
Healthcare and research involvement
A significant number of participants reported experiencing symptoms of both atopic eczema and TSW simultaneously. While cortisone cream was often cited as a triggering factor, some mentioned cortisone tablets, and a few pointed to non-cortisone treatments.
“It is crucial for healthcare professionals and researchers to engage in discussions about TSW and provide scientifically grounded knowledge wherever possible. Cortisone cream remains a highly effective and safe treatment for the majority, and there is currently no evidence to suggest that patients should avoid it due to fears associated with TSW symptoms,” emphasizes Mikael Alsterholm.
“That said, there exists a patient population with distinct experiences related to TSW, and their symptoms and possible underlying causes need thorough investigation through both research and healthcare practices. To facilitate this, we first need to clearly define TSW. We recognize that this can be a complex task, but we hope this study can contribute to establishing such a definition,” he concludes.
