‘Debilitated’: Kiwi’s battle with topical steroid withdrawal

Te Rima Whakatau experienced symptoms of topical steroid withdrawal after his eczema was treated with steroid creams. Photos / Te Rima Whakatau
An Auckland-based artist living with debilitating symptoms of topical steroid withdrawal (TSW) believes his dermatologists initially failed to recognise the condition. Now, he’s fundraising for treatment overseas in the hopes it will give him his “real skin back”.
Te Rima Whakatau, 30, says he relied on steroid creams prescribed by his GP to treat his eczema as a child.
Looking back, he feels he and his family “weren’t taught exactly how to use them correctly”.
“We were kind of naive to it and would just slap it on like a sunscreen,” the artist, originally from Taranaki, tells the Herald.
“There needs to be a little bit more regulation and a little bit more education as to the applications of these creams.”
As his skin worsened over the years, he tried changing his diet on advice from a naturopath and briefly stopped using steroids to take part in a clinical trial for a potential new eczema treatment in August this year.
However, he soon began to suffer the effects of coming off them, to the point where he was hospitalised a few weeks ago with pain, inflammation and circulation loss.
He says he then asked his dermatologists if he could be experiencing topical steroid withdrawal – the severe side effects of long-term topical steroid use.
“They tried telling me that it wasn’t what I was going through and that I just had really bad eczema,” Whakatau says.
“They came back a couple of days later and said after some research they realised that there is a thing called topical steroid withdrawal … these are the medical professionals that are making the decisions of what’s going on and in my body when they don’t even know the full repercussions.”
Whakatau says he was left feeling disappointed and “gaslit” by his experience in hospital and turned to social media, where he saw many others with the condition saying treatment called cold atmospheric plasma therapy (CAP) had helped them heal.
“They’ve got their lives back and just live a normal daily life – because that’s been taken away from us with this condition,” he says.
Cold atmospheric plasma has been shown to have positive effects on TSW, eczema and atopic dermatitis – according to one published in the European Journal of Medical Research in October this year, it is a “revolutionary” treatment that aids wound healing and speeds up tissue regeneration.
Now, Whakatau is fundraising through Givealittle to travel to a clinic in Thailand offering the treatment, hoping he will “get my normal skin back – my real skin back”.
At the time of writing, he’s raised more than $10,200 and says the response from his friends, family and those who have donated has been “beautiful”.
“I’m still quite debilitated and quite bedridden, and Mum basically has to be my nurse at this given time,” he shares.
“I’m quite an independent person, so giving that up and surrendering to the fact that people want to help me has been the hardest barrier that I’ve had to get through – but I’ve gotten to the place where I’m just accepting it now because I know that I can’t do this on my own and I do need help.”
Whakatau wants other Kiwis suffering from eczema to be aware of what they’re putting on their skin.
“I think if they are using these creams then that needs to be done under careful regulation. There’s a place for them, but don’t look to them as your saviour because they are just a quick fix – they are not the thing that is going to heal the root cause of the problem.”
He also wants others to know that “there is hope”.
“There is light at the end of the tunnel, because this isn’t just the physical pain, it’s a mental and emotional pain as well that you have to go through … it’s going to be okay.”
According to DermNet, TSW is a rare reaction that can occur in eczema patients who stop using topical steroids after prolonged use.
There are two ways it presents: red, burning skin, which looks like severe sunburn, and papules – small, raised pimples blistering the skin, which can cause infection if they rupture.
Vanessa Jenkins, executive manager at the Eczema Association of New Zealand, says it’s only in recent years that the condition has been recognised – and even then there’s a lack of consensus among health professionals.
“From our perspective, it refers to a rare adverse reaction relating to the use of topical steroids after it has been discontinued. In some cases, they can still be using steroids and have this condition present,” she tells the Herald, noting that research into topical steroid withdrawal is still limited.
“Some GPs and dermatologists recognise that this is actually a condition that needs to be dealt with slightly differently to the average eczema, and some of them don’t.
“In my experience it’s 50-50 – some people have self-diagnosed and others have actually got a full diagnosis from a dermatologist.”
Jenkins says there has been a “massive increase” in eczema cases in New Zealand in the past few decades.
“The understanding of how eczema works and the treatments that are now coming out – they just weren’t around 30 years ago. It was very much, ‘Let’s put a Band-Aid on it, slap some steroids on it and away you go’.”
The correct way to use steroids is better understood now, she says.
“Nine times out of 10, it probably worked – whereas now I think people are so aware of what they’re putting into their bodies and on their bodies, a lot of people have gone, ‘Well, actually, that’s no longer an option for us’.”
Jenkins wants those suffering from eczema to know, “You’re not alone in this. There are ways to get support.
“The mental health impact of eczema is extraordinary and so to be able to just even have a natter with somebody who actually gets it is really helpful. Reach out, because you’ve got nothing to lose.”
More information and resources about eczema are available on the EANZ website. You can also visit Starship’s website for information from the Child and Youth Eczema Clinical Network – Te Rōpū Kiripai Hapori.