Doctors writing in BMJ Case Reports warn that the limited awareness, particularly among clinicians, of the medical and psychological complexity of topical steroid withdrawal (TSW), is leading to “unfounded fear, particularly on social media, that all steroids are harmful and should be avoided in favour of other often untested and unproven remedies”.
‘A rebound flare-up of symptoms’
Also known as ‘TSW syndrome’, ‘steroid addiction’ and ‘red burning skin syndrome’, the condition can occur when topical corticosteroids used to treat inflammatory skin conditions such as eczema or psoriasis are tapered or stopped abruptly after long-term use.
Steroid creams are available in 4 strengths, ranging from mild to very strong, and are highly effective when used appropriately.
However, according to the report authors, one of whom speaks from direct experience, “withdrawing treatment — particularly the stronger formulations — after protracted use can prompt a rebound flare-up of symptoms, which can be even more severe and debilitating than the original condition.”
“These symptoms can spread well beyond the original areas of treatment and additionally trigger insomnia and depression,” the authors explain.
“The underlying causes are only partially understood, while diagnosis can be tricky because of the highly variable presenting symptoms.”
A TSW case study
To promote wider recognition of the syndrome, the report authors present a case that exemplifies some of the challenges faced by both clinicians and patients.
The case involves a middle-aged woman with a history of atopic eczema since infancy that has been treated with varying strengths of steroid creams for sometimes lengthy periods.
“She was referred to dermatology for review and explained that she had had a flare-up of symptoms, which had persisted for 18 months until she was treated with a gradually tapering 4-week course of steroid tablets,” they write.
“She had significant skin thinning, particularly on her arms, and thickened leathery skin (lichenification) in the folds of her elbows and wrists.
“She was prescribed further steroid creams to ward off future flare-ups, which she decided to stop using a month after her review.
“Her skin symptoms then significantly worsened, as did her general health.
“She had widespread skin reddening, with a burning sensation and intense itching. Her skin became dry, scaly, thickened, and cracked, with deep tears in some areas.
“She also reported swelling in the thighs, feet, ankles, and around the eyes and extensive skin folds and sagging.
“Systemic symptoms included dizziness, nausea, hair loss, insomnia, low blood pressure, extremes of temperature and sensations of dampness and numbness.
“She experienced intense nerve pain and sharp jolts of pain akin to an electric shock. Her symptoms were incapacitating.
“She suspected topical steroid withdrawal.
“It took 28 months for her symptoms to resolve, during which time she decided against any further treatment, even skin moisturisers.
“She has since experienced occasional mild flare-ups but has not applied steroid creams.”
‘TSW prevention should be a priority’
Commenting on her experience, she explains that at times the severity and extent of her symptoms left her unable to get out of bed, and feeling like she might die.
“I should have liked to have been supported to withdraw safely. Without a diagnosis, this was not possible: I was being treated for eczema, which included continued steroid treatment. It is my understanding that TSW patients will not recover while steroids are part of their recovery plan,” she writes.
“I am pleased that more is now known about TSW, but I should like to see TSW diagnoses routinely being considered where steroids are no longer controlling a patient’s skin or when a patient simply feels that something is ‘different’ to usual.
“More than that, I should like to see TSW prevention a priority, so that there is no new generation of patients who have to endure the suffering that I have endured.”
‘Break the cycle of distrust’
The report’s authors note that while there’s “increasing recognition of TSW within the dermatological community, it remains underdiagnosed in routine practice.”
This, they say, often leads patients to “online forums and self-treatment […] which can lead to inconsistent or even harmful practices.”
“While social media has raised awareness for poorly recognised conditions like TSW, it has significantly contributed to steroid phobia,” they warn.
“From our medical experience, exposure to alarming online narratives has led many patients to refuse [topical steroid] management of their conditions, both dermatological and otherwise, despite reassurance by clinicians about their safe and approved use.
“Breaking the cycle of distrust and enhancing patient care requires clinicians to address patients’ concerns with empathy, prioritising patient education.
“By fostering open discussions about patients’ beliefs and perspectives while simultaneously providing evidence-based recommendations, clinicians can support well-informed decision making and improve treatment outcomes.”
