ITSAN Support Community:
The vast majority of our members ceased topical steroids “cold turkey.” Our members report that tapering topical steroids (whether by substituting a weaker steroid or using less of often, or both) seemed to prolong the steroid rebound phase. To date, a topical steroid “step down” method without rebound or relapse of symptoms has not been discovered. However, step down therapies may (in theory) be helpful in reducing the systemic symptoms of the syndrome. Successful treatment regimens include ceasing topical/oral/injected corticosteroids, treating symptoms, and monitoring for infection.
Narrowband UVB light therapy can be a helpful option in the later stages of TSWS, when the skin is no longer raw, burning or oozing. UV therapy can cause irritation when used in the early stages, so caution must be used.
Immunosuppressants and immunomodulators have also helped some of our community members lessen the severity of TSWS symptoms. However, these medications are not meant to be used long term. There are side effects and risks that all patients need to be aware of to have proper informed consent. Many in the TSW community also experienced short-lived relief, with return of symptoms and/or new symptoms over time – mirroring their topical steroid withdrawal experience.
Infections reported in support groups are most commonly Staph, MRSA, and Eczema Herpeticum. Skin is open and vulnerable to infection during TSWS, so physician support and close monitoring is imperative. Treatment methods for infection and infection prevention include: swabbing for infection, antibiotics (oral or topical), antivirals, bleach baths, apple cider vinegar baths, saltwater baths, as well as dry wrapping (or with an emollient) in gauze, eczema wear, and gloves. Many of our members also seek out alternatives for infection prevention which include silver sprays, antibacterial essential oil blends, coconut oil, etc. Please see the “Coping with TSWS” tab for tips culminating in a “Survival Guide” for TSWS sufferers from one member to another.
The most important things to remember when treating TSWS topical steroid cessation is imperative, the time frame is protracted, symptoms vary at different stages, and treatment must be tailored to the individual.
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