Magic. That’s the word Te Rima Whakatau uses to describe how it first felt to use topical steroid creams for his eczema.
“It’s like a magic potion,” he says. “I thought that was my savior.”
Topical steroids are a common and effective treatment for eczema that are applied to the skin, normally in the form of creams.
But if they aren’t used safely, they can cause something called topical steroid withdrawal.
It’s an extremely painful condition that has blown up on social media.
But despite steroids being the first line of defence for eczema for more than 50 years, the New Zealand Dermatological Society says there is little medical research about topical steroid withdrawal and there is no established medical definition for it.
So why do we know so little about it?
Watch the full Re: News documentary on TVNZ+
Eczema in Aotearoa
New Zealand has some of the highest rates of eczema in the world. It affects about one in four kids and 7% of adults.
Te Rima has had eczema since he was 13. Now 30, he has used steroid creams on and off for about 15 years.
But over time he says the steroids stopped working so he says he was prescribed stronger steroids and eventually Prednisone, an oral steroid.
But when he stopped using them, he says the rebound effect was “horrific”.
“Three, five days after you stop it comes back worse…and it’s shifted in different places around your body,” he says.
What is topical steroid withdrawal?
Topical steroid withdrawal is a severe skin inflammation that can occur when someone stops using strong steroids after prolonged use.
It can cause skin itching, burning, redness, scaling, swelling and weeping.
Te Rima stopped using steroids completely four months ago and says the feeling of withdrawal is nothing compared to eczema.
He’s a portrait artist but hasn’t been able to work for the last four months because of how much pain he is in.
“My nervous system is too wrecked at the moment to be able to hold a pencil.”
Te Rima has never had a formal diagnosis of topical steroid withdrawal.
But he is self-diagnosed and says he’s had some medical professionals agree with him in conversation, while others say it is severe eczema.
‘It’s been denied as a condition for a really long time’
Vanessa Jenkins is the managing director of Eczema Association New Zealand, a charity that supports eczema sufferers and carers.
She says for a long time topical steroid withdrawal had been “lumped in the eczema category” and it’s only recently people have started to see it as something different.
“We’re so much more aware of what we’re putting on our skin and putting into our bodies and so now people are talking about it,” she says.
“What we are hearing from the community is that they think they’ve got it, they go to the dermatologist, and that dermatologist is going, well, I can’t say yes or no.
“And then the person is still left questioning, what is it that I’m actually dealing with? This feels different. This looks different.”
Jenkins says the lack of research into topical steroid withdrawal is stopping people from being diagnosed.
“There’s a lack of evidence, there’s a lack of data. With a lack of data comes uncertainty,” she says.
“Until we have that data and those tangible evidence points, we’re not going to convince everybody.”
Going viral on social media
Medical director of The Royal New Zealand College of General Practitioners, Dr Luke Bradford, has been a GP for 15 years.
He says recognition of topical steroid withdrawal has only recently “popped up” due to the condition going viral on social media.
“It’s not something that has been in the understanding of the profession all the way through. And that’s why we haven’t got the data necessarily on the who’s and why’s.”
Topical steroids is a hot topic on social media. On Instagram, use of the hashtag #topicalsteroidwithdrawal has gone up 288% since 2016 and has more than 600 million views on TikTok.
Te Rima has also been sharing his story online and has gained millions of views.
But Dr Bradford warns that just because you’ve seen one person’s story on social media, doesn’t mean the condition is widespread.
“The research isn’t there yet because it isn’t that prevalent. I think probably in 15 years I’ve only had one patient with really bad globalized withdrawal symptoms.”
He says bad side effects can happen, but with topical steroid withdrawal there are risk factors.
“It is long-term use of high-dose steroids, normally on the face.And use of steroids for short to medium use on the rest of the body is actually safe and it’s really effective.”
So how do you use topical steroids safely?
NZ Dermatological Society recommendations say steroid creams should only be used once or twice a day for no more than two to four weeks.
It says the higher the potency and longer the period of use, the more risk there is for withdrawal reactions.
It also recommends gradually weaning off steroids to minimize the risk of withdrawal.
However, Te Rima feels he wasn’t given information about the risks of steroid withdrawal or how to wean off them safely.
“Usually you are naive to it and just slap it on you. Not realising that those other areas that aren’t affected are becoming addicted to the steroid as well.”
Vanessa Jenkins from Eczema Association New Zealand says patients aren’t educated enough about withdrawal when they are prescribed steroids from a GP.
“They [GPs] can diagnose, prescribe and the times up,” she says.
Dr Luke Bradford agrees that in a typical 15 minute GP appointment, sometimes there isn’t enough time to go through an eczema plan.
He says it isn’t routine to warn patients about steroids when they are prescribed because they are typically only short-term medicines.
“I think there’s a risk that they’re overused by some people because we haven’t managed to get that education through.”
‘I want to live a normal life’
Te Rima and his mum are heading to Thailand to get a treatment not available in New Zealand – cold atmospheric plasma therapy which speeds up the skin’s healing.
“I’m going to Thailand to get some of this and hopefully be a step closer to … living a normal life for once.
“I just want to create so much art, there’s a lot that I want to do.”
Watch the full Re: News documentary on TVNZ+
