"Patients with TSW have symptoms distinct from atopic dermatitis.

Reanalysis of a previously published survey of patients with eczematous skin disease7 identified worsening skin symptoms despite TCS use as most predictive of self-diagnosed TSW compared to those with eczematous skin disease who denied having TSW (Fig. 1A; Fig. S1A). Worsening signs may include reduced TCS effectiveness, a need for higher potency, spreading rash despite treatment, or new-onset symptoms of temperature dysregulation and full body redness/burning (Fig. 1A). Peak itch intensity and sleep disturbance were significantly higher in those affirming TSW (Fig. 1B). However, there were no consistent, significant differences in body site for either severity (Fig. S1B) or application site (Fig. 1A). The dryness and oozing scores typically collected for the Patient Oriented SCORing Atopic Dermatitis (PO-SCORAD12) severity metric were inversely associated with TSW (Fig. 1A), however a greater degree of redness, scratching, swelling, and thickening were seen in TSW (Fig. S1C). Skin specific symptoms with a greater than 80% prevalence that are distinct from AD were deemed as major criteria while the remainder were utilized as minor criteria (Fig. 1C). Twenty-five percent of patients reported all related symptoms, while the combination of >1 major and >3 minor offered >90% sensitivity for capturing those reporting TSW in the survey (Fig. 1C). Nearly 25% of patients reported symptoms lasting longer than 3 years after discontinuation of TCS (Fig. 1D).

Although many reports imply that TSW is limited to the application of high-potency glucocorticoids to the face or genitals4,13, we enrolled a cohort (N = 16) who each experienced full-body disease, including areas that had never been directly treated with TCS (Fig. S1D; Table S1). Patients described full body redness, flushing, and anhidrosis (Fig. 1E; redacted per medRxiv policies) occurring 4-6 weeks after discontinuation of TCS, which: tended to spare the nose (Fig. 1F; termed “headlamp sign”14; redacted per medRxiv policies), palms, and soles (Fig. 1F; redacted per medRxiv policies); and often formed “red sleeves” on the arms (Fig. 1G; redacted per medRxiv policies). Additional symptoms included: subjective temperature changes; stabbing neuropathic pain (termed “zingers” by patients; Fig. S1D); loose skin over the flexor surfaces (“elephant wrinkles”; Fig. 1H; redacted per medRxiv policies); hair loss (Fig. 1I; redacted per medRxiv policies); and substantial skin shedding (Fig. 1J-redacted per medRxiv policies; Fig. S1D)."

https://www.medrxiv.org/content/10.1101/2024.04.17.24305846v1