Addressing Topical Steroid Withdrawal: Insights into Diagnosis and Treatment

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Addressing Topical Steroid Withdrawal: Insights into Diagnosis and Treatment

Since 2015, patient-led conversations about topical steroid withdrawal (TSW) have quickly grown on social media. Patients are often troubled by the potential adverse effects of topical corticosteroids (TCS) and are shocked in the rare instances of a sudden severe worsening of their skin conditions after rapid discontinuation of therapy. This has increased questionable TSW self-diagnoses and harmful self-treatment. [1]

According to a JAMA Dermatology systematic review, the prevalence of topical corticophobia, or fear of corticosteroids, ranged from 21.0% to 83.7%. Corticophobia may be due to previously experienced adverse effects, TSW, or the spread of misinformation. These painful lesions have confused patients, with many seeking alternative treatments (i.e. no moisture regimens, acupuncture, dietary restrictions), which suggests a need for better care to maintain a strong patient-clinician relationship. As a result, healthcare professionals are reevaluating how TSW is addressed. [2-4]

What is Topical Steroid Withdrawal (TSW)?

Topical steroid withdrawal is a phenomenon that usually occurs after the utilization of moderate to high-potency steroids (i.e. betamethasone, fluticasone, triamcinolone), especially when overused, misused, or used for extended periods of time. There has historically been some debate as to whether TSW is an independent condition, or if simply a severe rebound case of the patient’s pre-existing dermal condition. However, while the direct cause may be unknown, the clinical presentation is consistent amongst adult and pediatric patients. [1]

Clinical Presentation and Diagnostic Criteria

Clinical presentation of TSW includes widespread, distinct, erythematous skin with “red sleeves,” “elephant wrinkles,” red face syndrome, or headlight signs, which differs from atopic dermatitis. Red face syndrome is an outbreak where red, scaly, papule-covered skin erupts in the centrofacial and periorificial regions, which may lead to irreversible skin thinning and telangiectasia. Meanwhile, a headlight sign is a distinct red facial complexion that typically extends to midway through the cheeks, except for a clear central nose and mouth area. In addition, patients report burning pain, itching, skin sensitivity, edema, crusting, and desquamation (skin shedding). Patients with deeper complexions exhibit darkening or greying of the skin instead of redness. This breakout is usually more severe than the original dermal condition and may include additional symptoms, such as physical (fatigue, fever, body aches), systemic (increased infection risk), or psychological (insomnia, depression, anxiety) effects. [1,5]

Patient histories usually report extensive use of a topical steroid. Symptoms generally appear after discontinuation of therapy and may take months or years before resolving, as seen in the cases mentioned below. [6,7]

Case Studies:

Pediatric case study: A 2019 qualitative case series reported the cases of 10 pediatric patients, between the ages of 3 and 15 years, whose parents discontinued long-term high-potency topical steroids. The most common rationale behind discontinuation was from another family member’s TSW diagnosis.  Additionally, two patients found TCSs ineffective, and three children’s parents self-educated via the internet before stopping therapy. At least two defining TSW symptoms (red skin, elephant wrinkles, red sleeves) were exhibited in 8 of the 10 children. [6]

Topical Steroid Withdrawal: A Case Series of 10 Children (Table 1)
	Patient demographics	Reported symptoms	Time to TSW resolution
Case 1	Age 3 years TSW 3 months after discontinuing (d/c) TCS	Gradual bilateral red sleeve Nocturnal itching Excessive shedding Oozing at anterior ankles (8 months to clear) Sleep disturbed	22 months: condition reverted to pre-treatment atopic dermatitis (AD)
Case 2	Age 4 years TSW 8 months after d/c TCS	Erythema Burning pain Eczematous skin past where TCS was originally applied Stinging sensation with sweat/exercise	15 months: peak TSW symptoms 29 months: final skin symptom resolved (stinging with sweat)
Case 3	Age 5 years TSW 6 months after d/c TCS	Red sleeve Elephant wrinkles Oozing on face Increased exfoliation	48 months: eczematous area limited to cubital and popliteal fossae
Case 4	Age 8 months old TSW 3 days after d/c TCS	Elephant wrinkles Oozing Lymphadenopathy Sleep disturbance	30 months: symptom resolution 41 months: small eczematous region behind right knee
Case 5	Age 3 years TSW 3 days after d/c TCS	Red skin with oozing Elephant wrinkles Lymphadenopathy	8 months: symptoms improved with exacerbations the following two winters (lymphadenopathy) 30 months: elephant wrinkles present on anterior knees
Case 6	Age 4 years TSW 3 days after d/c TCS	Urticarial lesions (TCS never applied) Oozing  Shedding Lymphadenopathy Itching (nocturnal) Burning pain (nocturnal)	36 months: significant improvement (after using cream from an overseas hydrotherapy clinic, which may have undisclosed TCS)
Case 7	Age 4 years TSW 1 week after d/c TCS	Full-body erythema Burning pain Temperature dysregulation Hair loss Elephant wrinkles Edema Oozing Excessive shedding	9 months: symptom improvement 28 months: reverted to original, untreated AD status
Case 8	Age 15 years TSW 4 months after d/c TCS	Peri-orbital swelling Burning pain Facial and neck redness Oozing Skin exfoliation Insomnia (due to nocturnal symptoms)	14 months: symptom resolution for 2 months 16 months: itching, burning pain, insomnia 21 months: diagnosed with cataracts 24 months: skin normal
Case 9	Age 15 years TSW 1 week after d/c TCS	Redness Elephant wrinkles Excessive exfoliation Oozing Burning pain Skin sensitivity Discomfort with sweating/exercise	8 months: skin normal 18 months: skin normal
Case 10	Age 4 years TSW within days after d/c TCS	Oozing Erythema Excessive exfoliation Skin sensitivity Edema Lymphadenopathy Burning pain Hair loss Temperature dyregulation	Parents chose not to recommence with TCS 18 months: skin improvement 29 months: skin clear
Reference: Sheary B. Topical Steroid Withdrawal: A Case Series of 10 Children. Acta Derm Venereol. 2019;99(6):551-556. doi:10.2340/00015555-3144

Prevention

Guidelines mentioned the debate on discontinuation techniques to decrease withdrawal risk. There is no documented recommendation against abrupt discontinuation of therapy. However, those who support a more gradual approach opt to either taper an oral corticosteroid or decrease to a low-potency agent.

Treatment Options

There are currently no clear guidelines for treating topical steroid withdrawal (TSW). However, patients are typically treated with individualized care plans [see Table 2]. Emollients and moisturizers (i.e. petroleum, or glycerin-containing products) are generally recommended to hydrate the skin and create a barrier against irritants, though applying them can be painful due to open wounds and skin sensitivity. Cold compresses, ice, and analgesics may help alleviate burning pain, with gabapentin often used in severe cases. Pruritus can be addressed with antihistamines or doxepin while sleeping aids are commonly used to combat insomnia caused by itching. For depression or anxiety, counseling or anxiolytics may be indicated. Phototherapy and immunosuppressants may reduce the inflammatory immune response associated with TSW. [8]

Tetracycline antibiotics and calcineurin inhibitors have reportedly been effective in papulopustular topical corticosteroid withdrawal, while dupilumab may be considered for atopic dermatitis. One case study reviewed the effectiveness of TSW resolution using ruxolitinib. [8,9]

Ruxolitinib Case: A 2024 case study described a 69-year-old woman who was diagnosed with chronic dermatitis on the lips, mouth, lower cheeks, and chin, and was seeking a third opinion. She was negative for seasonal worsening or atopic history, fever, chills, or generalized weakness. The patient discontinued a lip balm due to the results of an allergy test in previous assessments, and self-initiated hydrocortisone 1% cream, with no improvement. Over five years, the patient used hydrocortisone 2.5% once or twice daily for flares (erythema and/or burning, itching, and crusting) as per her dermatologist’s recommendation. Supplements, almonds, and topical allergens were stopped, and nightly hydrocortisone 2.5% cream with daily doxycycline 20 mg were initiated with no improvement.

A TSW diagnosis was made due to the patient’s most recent presentation being classic for red face syndrome (faint pink patches, fine telangiectasias, pain, and stinging on the lips, bilateral nasolabial cheeks and chin), her past presentation (sharp demarcation of the affected area), and cyclic nature of the condition. With allergy avoidance and no systemic symptoms reported, atopic contact dermatitis or an autoimmune diagnosis were considered unlikely. The patient tapered TCS at one-month increments before discontinuing. Doxycycline 20 mg was continued for its anti-inflammatory benefits, and tacrolimus 0.1% ointment twice daily was initiated. Non-allergen products were continued. 

Ruxolitinib 1.5% cream twice daily was prescribed as an alternative therapy after the failure of tacrolimus and pimecrolimus, where the patient reported erythema, swelling, and burning upon areas of application. She also reported improved but sporadic flares, resolved by 48 hours of TCS usage.

At three months, burning, itching, erythema, and plaques were resolved with once-daily Ruxolitinib. She reported TCS discontinuation with no flares. The patient continued ruxolitinib, as per recommendations, for five additional months with continued clear skin. It was noted that Ruxolitinib was scheduled to be tapered off over the course of several months. [9] 

Treatments (Table 2)
Severity Level	Symptom	Drug/Therapeutics
General	Dry, flaking skin	Emollients Moisturizes
	Burning pain	Cold compresses/ice Analgesic Gabapentin (severe cases)
	Pruritus	Antihistamine Doxepin
	Papules/pustules	Tetracyclines Calcineurin inhibitor
	Psychosocial	Psychological support
Severe case	Insomnia	Sleeping aids
	Immune response	Immunosuppressants
		Phototherapy
	Anxiety	Anxiolytics
Reference: Mohta A, Sathe NC. Topical Steroid Withdrawal (Red Skin Syndrome). In: StatPearls. Treasure Island (FL): StatPearls Publishing; May 7, 2024.

Conclusions

There is conflicting data on the development of severe skin reactions after the abrupt discontinuation of topical corticosteroids. While the pathophysiology is being debated, treatment for TSW is necessary. Care is currently individualized using various therapies, including ruxolitinib, with a recent case showing success, after other treatments failed. Given the painful nature of TSW, patients need effective solutions. Further research is needed to explore the use of ruxolitinib and other treatments for this condition.

References

[1] Mohta A, Sathe NC. Topical Steroid Withdrawal (Red Skin Syndrome). In: StatPearls. Treasure Island (FL): StatPearls Publishing; May 7, 2024.

[2] Li AW, Yin ES, Antaya RJ. Topical Corticosteroid Phobia in Atopic Dermatitis: A Systematic Review. JAMA Dermatol. 2017;153(10):1036-1042. doi:10.1001/jamadermatol.2017.2437

[3] Finnegan P, Murphy M, O'Connor C. #corticophobia: a review on online misinformation related to topical steroids. Clin Exp Dermatol. 2023;48(2):112-115. doi:10.1093/ced/llac019

[4] Brookes TS, Barlow R, Mohandas P, Bewley A. Topical steroid withdrawal: an emerging clinical problem. Clin Exp Dermatol. 2023;48(9):1007-1011. doi:10.1093/ced/llad161

[5] Hwang J, Lio PA. Topical corticosteroid withdrawal ('steroid addiction'): an update of a systematic review. J Dermatolog Treat. 2022;33(3):1293-1298. doi:10.1080/09546634.2021.1882659

[6] Sheary B. Topical Steroid Withdrawal: A Case Series of 10 Children. Acta Derm Venereol. 2019;99(6):551-556. doi:10.2340/00015555-3144

[7] Feschuk AM, Pratt ME. Topical steroid withdrawal syndrome in a mother and son: A case report. SAGE Open Med Case Rep. 2023;11:2050313X231164268. Published 2023 Apr 4. doi:10.1177/2050313X231164268

[8] Sidbury R, Alikhan A, Bercovitch L, et al. Guidelines of care for the management of atopic dermatitis in adults with topical therapies. J Am Acad Dermatol. 2023;89(1):e1-e20. doi:10.1016/j.jaad.2022.12.029

[9] Shea M, Grinich E, Simpson E. Topical steroid withdrawal treated with ruxolitinib cream. JAAD Case Rep. 2024;48:5-7. Published 2024 Mar 29. doi:10.1016/j.jdcr.2024.03.011

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