After 15 years of relying on topical steroids to manage his eczema, Te Rima Whakatau is now grappling with the debilitating effects of a little-known condition that has drastically altered his life.
Topical Steroid Withdrawal (TSW) occurs when prolonged use of topical steroids is suddenly stopped or reduced, causing symptoms like itching, peeling and burning of the skin.
“It’s affected my ability to walk at times, just to even sometimes eat,” Whakatau says.
“The bending motions of the arms, [to] work, to make art, to enjoy time with my family. [It’s] debilitated me in every sense.”
The 30 year-old ringatoi (artist) has used topical steroids since he was a teenager to heal his eczema. He stopped using them 15 weeks ago.
“I started a clinical trial study for atopic dermatitis - no creams [or] steroids were working for me, so I was looking for another alternative. [And] I’m gettting the full effects of withdrawals.”
A 2020 study by Dermatology and Therapy estimated that 3-7% of long-term topical steroid users may experience TSW symptoms, though this could be higher due to underreporting. Tamariki, those with chronic skin conditions like eczema or psoriasis and individuals using steroids without proper medical supervision are at greater risk.
The New Zealand Dermatological Society, Mana Mātai Kiri (NZDS) says topical steroids have been in use for more than 50 years, but only recently has there been an increase in concern about TSW in media.
“At present, there is no established definition for TSW and it is not clear if all reported cases of this phenomenon have the same underlying cause or are even caused by topical steroids.”
Whakatau says he’s concerned about how accessible topical steroids are to the public.
“That’s the problem I think, is that the medications and creams were given out so freely - they’re given out like lollies and they shouldn’t be because of the harmful effects and how dangerous those steroids are,” he says.
Whakatau has tried using natural medicines but was unsuccessful in healing his skin’s irritation.
“I’ve been trying kawakawa balm since I was young - bathing in it, ointments, drinking it - a lot of natural things that I’ve tried to do but nothing works.”
Despite the harsh effects of this process, Whakatau has seen some positive outcomes.
“Being able to love my body instead of resenting it has been my biggest takeaway. [As] traumatic and as painful as it is, it has been a beautiful journey.”
He is currently raising $60,000 to travel to Thailand where he will receive Cold Atmospheric Plasma (CAT) therapy over a six-month period to heal his skin.
