Topical Steroid Withdrawal (TSW): What the Eczema Community Needs to Know

Overview

• TSW is a serious potential side effect of topical steroid use, not widely recognized.
• The condition's prevalence, causes, and trigger levels of steroid use are largely unknown.
• Topical steroids are crucial for managing eczema but can lead to TSW in some cases.

Symptoms of TSW

• Burning sensation, skin flaking, peeling, or spreading.
• Swelling, redness (erythema), and thin skin.
• Oozing, pus-filled bumps, and steroid dermatitis.
• Pain, insomnia, hair loss, shivering, fatigue.
• Psychological impact: depression and disability.

Personal Accounts

• Linette Roungchun and Briana Banos shared their struggles with TSW, emphasizing severe social and emotional impacts.
• TSW can lead to quitting jobs and needing financial support from family.
• The condition can severely impact social life and emotional well-being.

Understanding TSW

• TSW occurs after stopping topical corticosteroids, known as steroid withdrawal syndrome or red skin syndrome.
• Systematic reviews show TSW is more common in adult women using mid/high potency steroids on sensitive areas like the face.

Preventative Measures

• Avoid long-term daily usage of medium to high potency steroids.
• Incorporate non-steroidal therapies and use topical steroids intermittently.
• Dermatologists need better education on safe steroid use and recognizing TSW.
• Awareness of TSW's existence and early signs is crucial.

Diagnosing TSW

• No accepted diagnostic criteria yet.
• Three indicators: burning/stinging pain, general redness, and history of significant steroid use.
• Dr. Lio suggests awareness and careful medication use can prevent TSW in most cases.

Current Efforts & Future Direction

• TSW is a grassroots, patient-led diagnosis.
• There's a push for recognition and alternative treatments, such as non-steroidal options and natural remedies.
• ITSAN and other organizations advocate for TSW awareness, research, and better support systems.

Recommendations for Suspected TSW

• Cease topical steroid use; healing times vary.
• Seek support from ITSAN and similar organizations.
• Consider consulting specialists knowledgeable in TSW, including those who work virtually.

Hopeful Developments

• New non-steroidal treatments and approaches are emerging.
• Increased awareness through documentaries like "Preventable."
• Collaborations between organizations like ITSAN and NEA to raise awareness and gather data.
• Advocacy for more holistic and non-steroidal treatment options.

Conclusion

• Continued education and awareness are needed to manage and prevent TSW effectively.
• Patients are encouraged to discuss concerns about TSW with healthcare providers and explore diverse treatment options.