Topical steroid withdrawal

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Topical steroid withdrawal
Other namesTopical steroid rebound phenomena (TSRP), steroid dermatitis, red burning skin syndrome, red skin syndrome, iatrogenic exfoliative dermatitis (idiopathic erythroderma) [1]
Red (burning) Skin Syndrome - Showing Face Pattern with white nose sign and spared palms (soles spared too).jpg
Red burning skin syndrome from topical steroids. Face pattern with nose sign and spared palms (soles also spared)
Specialty Dermatology
Symptoms Red skin, burning sensation, desquamation, itchiness [2]
Causes Stopping topical steroids after frequent long-term use [2]
PreventionUsing steroid creams for less than two weeks [2] [3]
FrequencyNot known [2]

Topical Steroid Withdrawal Syndrome (TSWS), more commonly known as Topical Steroid Withdrawal (TSW) or Red Skin Syndrome (coined by Dr. Marvin Rapaport), and least commonly known as Topical Steroid Rebound Phenomena (TSRP) (as used by independent researcher, Corinna Kennedy), or steroid dermatitis, is a prolonged and severe rebound characterized by flushed burning skin, severe itch, edema (swelling), and profuse shedding of skin. Leading up to TSW, one needs to use more steroids in higher potencies to manage flares. Upon discontinuation of steroids, one develops new, more severe symptoms. Symptoms commonly dissipate and skin improves over an extended period of time after abstaining from steroids. [4]

Contents

A further, more thorough definition is provided by ITSAN on their website. [5] An excerpt: TSW Syndrome is an iatrogenic condition, which means it is a condition caused inadvertently by a medical treatment. Not everyone who uses topical steroids will develop TSWS. It is unclear why some individuals experience TSWS secondary to topical steroid therapy and why others do not.

Resources

ITSAN, the International Topical Steroid Awareness Network, is the only nonprofit for this specific condition, standing out as a vital resource for individuals, families, and medical professionals needing guidance, education, and support. [6]

Films

The first Topical Steroid Withdrawal documentary was created by advocate, Briana Banos, titled, Preventable: Protecting Our Largest Organ. [7] Following this groundbreaking film in 2019 (that was also endorsed by the National Eczema Association) [8] , the following videos and films were also produced:

Awareness US

The first Topical Steroid Withdrawal Syndrome Awareness Resolution [14] was passed in Florida by Tamy Bellis in 2023. Between 2023 and now, other states have joined in TSW recognition due to advocates reaching out to their state representatives and state senators: Texas by Tanya Gantiva Richards, South Carolina by Matt Lawas, Illinois by Michael Deng, Georgia by Kelly Barta, Massachusetts by the Vasquez family, and Maine by JP Touchette. You are able to pass a resolution in your state by following the easiest guidelines provided by ITSAN. [14]

In 2023, Allergy and Asthma Network [4] and ITSAN published an important piece of data -- Corticosteroid Exposure and Cumulative Effects in Patients with Eczema: Results from a Patient Survey [15] . Between November 2020 to January 2021, 2,160 people from 70 countries answered this 26-question online survey. 1,889 were adults over the age of 18 who had eczema. There were 271 caregivers of children with eczema.

Also in 2023, the first ever quantitative research on TSW was conducted through the NIH with Dr. Ian Myles. [16] He put together a YouTube video explaining the research and its conclusion, which found that TSW is a distinct entity separate from eczema. [17]

Awareness UK

As of 2025, the MHRA in the United Kingdom has fully acknowledged TSW [18] . A joint statement was also created by the National Eczema Society, the British Dermatological Nursing Group, and the British Association of Dermatologists, recognizing TSW as an urgent issue. [19] In reaction to this, The British Association of Dermatologists formed a Topical Steroid Withdrawal Working Party Group (TSW WPG) in collaboration with National Eczema Society, Scratch That [20] , Primary Care Dermatology Society and British Dermatological Nursing Group. "The aim of the TSW WPG is to produce an expert consensus guidance on supporting people with concerns about TSW, including a Patient Information Leaflet (PIL), and any revision to the above joint statement, as appropriate." [19]

In the United Kingdom, Prof Sara Brown and Dr. Alice Burleigh (University of Edinburgh) have been granted funding to investigate how TSW develops [21] , following in Dr. Ian Myles footsteps, while researchers including Dr. Paul Leighton, Dr. Laura Howells, and Dr. Lydia Tutt at the University of Nottingham, will be exploring how people with patients and healthcare professionals talk about Topical Steroid Withdrawal (TSW) [21] .

Awareness India

Awareness Australia

Symptoms affect the skin and include redness, a burning sensation, and itchiness, [2] which may then be followed by peeling. [2]

This condition generally requires the daily application of a topical steroid for more than 2 weeks but sometimes can occur with even less steroid use. It appears to be a specific adverse effect of topical corticosteroid use. [22] People with atopic dermatitis are most at risk. [3]

Treatment involves discontinuing the use of topical steroids, [2] either gradually or suddenly. [2] Counselling and cold compresses may also help. [2] Thousands of people congregate in online communities to support one another throughout the healing process, and cases have been reported in both adults and children. [2] [1] It was first described in 1979. [3]

Signs and symptoms

Red burning skin syndrome from topical steroids. Typical pattern on lower arms and hands Red (burning) Skin Syndrome - Typical Pattern of Lower Arms & Hands.jpg
Red burning skin syndrome from topical steroids. Typical pattern on lower arms and hands

Before discontinuation, steroid dermatitis is characterised by spreading dermatitis and worsening skin inflammation, which requires a stronger topical steroid to get the same result as the first prescription. This cycle is known as steroid addiction syndrome. [23] When topical steroid medication is stopped, the skin experiences redness, burning, itchiness, scabs, hot skin, swelling, stinging, hives, or oozing. This is known as topical steroid withdrawal. After the withdrawal period is over, the atopic dermatitis can cease or is less severe than it was before. [24] Topical steroid withdrawal has also been reported in the male scrotum area. [25] Other symptoms include nerve pain, insomnia, excessive sweating, anxiety, depression, fatigue, eye problems, and frequent infections.[ citation needed ]

*Put in Dr Myles findings

Duration

The duration of acute topical corticosteroid withdrawal is variable; the skin can take months to years to return to its original condition. [2] [26] The duration of steroid use may influence the recovery factor time, with the patients who used steroids for the longest reporting the slowest recovery.

Cause

To experience this withdrawal, it generally requires the misuse or application of a topical steroid daily for 2 to 4 months, depending on the potency of the topical corticosteroid. In some cases, this has been reported after as little as 2 weeks of use. [27] [1]

Mechanism of action

Historically, it was believed that cortisol was only produced by the adrenal glands, but research has shown that keratinocytes in human skin also produce cortisol. [28] Prolonged topical steroid (TS) application changes the glucocorticoid receptor (GR) expression pattern on the surface of lymphocytes; a patient experiencing resistance to a TS has a low ratio of GR-α to GR-β. In addition, the erythema characteristic of ‘red skin syndrome’ is due to a release of stored endothelial nitric oxide (NO) and subsequent vasodilation of dermal vessels. [1]

Diagnosis

Diagnosis is based on a rash occurring within weeks of stopping long-term topical steroids. [2] Specific signs include "headlight sign" (redness of the lower part of the face but not the nose or the area around the mouth), "red sleeve" (a rebound eruption stopping abruptly at the lower arms and hands), and "elephant wrinkles" (reduced skin elasticity). [3]

Differentiating this condition from the skin condition that the steroids were originally used to treat can be difficult. [2] Red, burning skin may be misdiagnosed. [24]

*Talk about Steroid Phobia and "social media" syndrome

Prevention

Until prevalence and susceptibility is discovered through research, the only true prevention is to abstain from the use of topical steroids. However, if a patient is informed of the risk of TSW from using topical steroid, then working with a supportive medical professional and monitoring topical steroid use (preferably not using steroid creams for periods of time longer than 2 weeks) [2] [3] could assist in preventing the condition.

Treatment

Treatment involves ceasing all use of topical steroids, either gradually or suddenly. [2] Antihistamines may help for itchiness. [3] Immunosuppressants and light therapy may also help some people. [3] Psychological support is often recommended. [2] [3] [27] At this time, treatment options that have been documented in literature include tacrolimus, pimecrolimus, and dupilumab (Dupixent). Some physicians have also seen positive outcomes with oral doxycycline or topical clindamycin. [29]

Need to add in JAK, CAP, TCM (as well as providers).

Epidemiology

The prevalence of the condition is unknown. [30] Many cases ranging from mild to severe have been reported in both adults and children. One survey of atopic dermatitis patients treated with topical steroids in Japan estimated that approximately 12% of adult patients may appear to be uncontrolled cases, although they are in fact addicted to a topical steroid. [24] [ clarification needed ]

History

A systematic review (meta-analysis) in accordance with evidence-based medicine frameworks and current research standards for clinical decision-making was performed in 2016 and was republished with updates in 2020. [31]

References

  1. 1 2 3 4 Juhász ML, Curley RA, Rasmussen A, Malakouti M, Silverberg N, Jacob SE (September–October 2017). "Systematic review of the topical steroid addiction and topical steroid withdrawal phenomenon in children diagnosed with atopic dermatitis and treated with topical corticosteroids". Journal of the Dermatology Nurses' Association. 9 (5): 233–240. doi:10.1097/JDN.0000000000000331. S2CID   80154596.
  2. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 "Topical corticosteroid withdrawal". DermNet NZ. Retrieved 19 July 2016.
  3. 1 2 3 4 5 6 7 8 Sheary B (June 2016). "Topical corticosteroid addiction and withdrawal - An overview for GPs". Australian Family Physician. 45 (6): 386–388. PMID   27622228.
  4. 1 2 "Corticosteroid Exposure and Cumulative Effects in Patients with Eczema: Results from a Patient Survey - Allergy & Asthma Network". allergyasthmanetwork.org. Retrieved 2025-08-25.
  5. ↑ "What is TSW Syndrome? – ITSAN" . Retrieved 2025-08-25.
  6. ↑ "ITSAN – Support for a global community living with Eczema and TSWS" . Retrieved 2025-08-25.
  7. ↑ Briana Banos (Preventable Documentary) (2019-03-22). PREVENTABLE: PROTECTING OUR LARGEST ORGAN - DOCUMENTARY . Retrieved 2025-08-25– via YouTube.
  8. ↑ Karey (2019-03-27). "Preventable - documenting TSW". National Eczema Association. Retrieved 2025-08-25.
  9. ↑ TSW Atlas (Heba Khaled) (2020-10-09). An Overview of TSW (Topical Steroid Withdrawal) . Retrieved 2025-08-25– via YouTube.
  10. ↑ Brian Nguyen (2021-12-17). TSW Journey: A Topical Steroid Withdrawal Documentary . Retrieved 2025-08-25– via YouTube.
  11. ↑ PCH Films (2022-01-25). Skin On Fire . Retrieved 2025-08-25– via YouTube.
  12. ↑ CutFocus (2022-02-25). My Life During Topical Steroid Withdrawal . Retrieved 2025-08-25– via YouTube.
  13. ↑ Briana Banos (Preventable Documentary) (2024-11-01). STILL PREVENTABLE: TSW Documentary by Briana Banos . Retrieved 2025-08-25– via YouTube.
  14. 1 2 "Advocate – ITSAN" . Retrieved 2025-08-25.
  15. ↑ Barta, Kelly; Fonacier, Luz S.; Hart, Mary; Lio, Peter; Tullos, Kathryn; Sheary, Belinda; Winders, Tonya A. (2023-01-01). "Corticosteroid exposure and cumulative effects in patients with eczema: Results from a patient survey". Annals of Allergy, Asthma & Immunology. 130 (1): 93–99.e10. doi:10.1016/j.anai.2022.09.031. ISSN   1081-1206. PMID   36191848.
  16. ↑ "Topical steroid withdrawal diagnostic criteria defined by NIH researchers | National Institutes of Health (NIH)". www.nih.gov. Retrieved 2025-08-25.
  17. ↑ Ian Myles MD MPH (2024-05-07). Topical Steroid Withdrawal: Results from an early study, explained to patients . Retrieved 2025-08-25– via YouTube.
  18. ↑ "Topical steroids: introduction of new labelling and a reminder of the possibility of severe side effects, including Topical Steroid Withdrawal Reactions". GOV.UK. Retrieved 2025-08-25.
  19. 1 2 "Topical Steroid Withdrawal Joint Statement". www.bad.org.uk. Retrieved 2025-08-25.
  20. ↑ reachomm. "Home". Scratch That. Retrieved 2025-08-25.
  21. 1 2 Sayers, Keisha (2025-05-28). "Our first grant round awardees". National Eczema Society. Retrieved 2025-08-25.
  22. ↑ Hajar T, Leshem YA, Hanifin JM, Nedorost ST, Lio PA, Paller AS, et al. (March 2015). "A systematic review of topical corticosteroid withdrawal ("steroid addiction") in patients with atopic dermatitis and other dermatoses". Journal of the American Academy of Dermatology. 72 (3): 541–549.e2. doi:10.1016/j.jaad.2014.11.024. PMID   25592622.
  23. ↑ Smith MC, Nedorost S, Tackett B (September 2007). "Facing up to withdrawal from topical steroids". Nursing. 37 (9): 60–61. doi:10.1097/01.NURSE.0000287732.08659.83. PMID   17728660.
  24. 1 2 3 Fukaya M, Sato K, Sato M, Kimata H, Fujisawa S, Dozono H, et al. (2014). "Topical steroid addiction in atopic dermatitis". Drug, Healthcare and Patient Safety. 6: 131–138. doi: 10.2147/dhps.s69201 . PMC   4207549 . PMID   25378953.
  25. ↑ Kling C, Obadiah J (2005-03-01). "Corticosteroid-dependent scrotum". Journal of the American Academy of Dermatology. 52 (3): P47. doi: 10.1016/j.jaad.2004.10.202 . ISSN   0190-9622.
  26. ↑ "Topical steroid addiction: Calls for more support for patients". BBC News. March 2021.
  27. 1 2 Ghosh A, Sengupta S, Coondoo A, Jana AK (September 2014). "Topical corticosteroid addiction and phobia". Indian Journal of Dermatology. 59 (5): 465–468. doi: 10.4103/0019-5154.139876 . PMC   4171914 . PMID   25284851.
  28. ↑ Cirillo N, Prime SS (June 2011). "Keratinocytes synthesize and activate cortisol". Journal of Cellular Biochemistry. 112 (6): 1499–1505. doi:10.1002/jcb.23081. PMID   21344493. S2CID   22289437.
  29. ↑ Lio PA (August 2019). "Topical Steroid Withdrawal in Atopic Dermatitis". Practical Dermatology.
  30. ↑ Ballard, A. (2021, March 22). TSW: What the eczema community needs to know. National Eczema Association. https://nationaleczema.org/blog/tsw-need-to-know/
  31. ↑ Hwang J (25 Dec 2020). "Topical corticosteroid withdrawal ('steroid addiction'): an update of a systematic review". Journal of Dermatological Treatment. 33 (3): 1293–1298. doi:10.1080/09546634.2021.1882659. PMID   33499686. S2CID   231764481.
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