Topical steroid withdrawal syndrome describes the collection of symptoms that can occur when potent topical steroids are stopped, and the skin reacts with a rebound flare-up.
The condition is also known as red skin syndrome (although that can be misleading and exclusionary when talking about rashes on skin of colour), and steroid-induced dermatitis.
The good news is that TSWS is rare in babies!
It tends to affect people later on in life, who have been using steroids to control their eczema for years; they find that the steroids are having less and less effect on their skin condition, and they’re having to use the steroids more frequently and in stronger potencies. If they stop using the steroids altogether as the creams are no longer effective in managing their skin condition, people can find that their skin reacts with a rebound rash. (TSWS can also occur in caregivers or parents who have to put steroids on other people.)
Of course, it can be hard to determine whether a rash is down to steroid withdrawal or the original condition the steroids were prescribed to manage. Doctors have identified particular symptoms that are associated with TSWS but not eczema, and use those to determine whether a rash is TSWS/topical steroid-induced dermatitis, rather than a severe eczema flare-up.
‘Red sleeves’ (with the caveat that on non-white skin, the ‘redness’ might show up differently): bright, hot, burning rash that covers the arms down to the wrist, but stops abruptly at the hands.
Oedema or swelling: puffy face, feet or eyes
Rashes in places where there was no eczema before
No improvement even with higher potencies of steroids
Skin oozing clear fluid
Extreme sensitivity to heat and cold
Swollen lymph nodes
Dry, sore eyes
If you're worried that your baby is suffering from the effects of topical steroids rather than eczema, do ask for a second opinion from your GP. Check out our article Tips to Calm Red Skin Syndrome in Children, and seek support from ITSAN.
Current medical advice is not to use daily topical steroids continuously for more than two to four weeks; then the frequency should be tapered to twice weekly use.
Check out our TSW Info Hub for more information about Topical Steroid Withdrawal/RSS.
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If you require medical advice we recommend you always contact your healthcare professional.
If you or someone you are caring for seems very unwell, is getting worse or you think there's something seriously wrong, call for emergency services straight away. For general medical advice, please contact your healthcare professional, this article does not contain or replace medical advice.
Do not delay getting help if you're worried. Trust your instincts.