Eczema Sufferer Offers Hope After Life 'Stripped Away' by Topical Steroid Withdrawal
Heidi Rein's life took a turn for the worse when she decided to stop using steroid medication to treat her eczema. She hoped her body would recover, but instead, she entered the most painful chapter of her life.
"Physical pain, extreme skin sensitivity, and nervous system disruption meant I often couldn't tolerate touch, which made things like hugging loved ones even difficult," Rein said. "It was like my life was stripped away."
Rein, 41, from Queensland's Gold Coast, has lived with eczema since she was eight years old. The chronic condition can cause itchy, red, and dry skin, often linked to a weakened skin barrier. Rein's eczema lasted for several years throughout her childhood before eventually disappearing.
That changed in 2013 when she moved from Finland to Australia. "It started creeping back up," she said. "I don't know why." Dry, irritated skin patches began appearing under her nose and along her jawline, but most noticeably on her hands.
Rein went to see a dermatologist, and because she'd had eczema as a child, she was put on potent steroid cream straight away. According to the Australasian College of Dermatologists, eczema is a chronic condition that is not curable and must be managed. Topical steroid creams are commonly prescribed to rapidly reduce inflammation, redness, and itching, allowing the skin barrier to heal.
Rein said she used the cream until her skin cleared, then stopped applying it until the next flare-up. Over time, however, she noticed the breaks between flare-ups became shorter and shorter. By 2016, the cream had stopped working altogether.
"It was getting worse," she said. "The cream wasn't really effective anymore and it started spreading into more areas."
As her condition worsened, Rein was eventually hospitalised and prescribed oral steroids. "It was like magic at first," she said, explaining the medication cleared her skin almost instantly. But once again, the relief was short-lived.
"I stayed clear for a while and then it started coming back," Rein said. "That cycle repeated over the years." By 2023, her skin condition had deteriorated significantly. She returned to her dermatologist and was prescribed another round of oral steroids, but this time, even five weeks on the treatment had no effect.
Frustrated and no longer wanting to rely on steroids, Rein made the decision to stop the medication immediately. "I went cold turkey," Rein said. "I just panicked and stopped." Unaware of how dangerous it could be to stop treatment so abruptly, her condition rapidly spiralled, leaving her in debilitating pain as her skin worsened dramatically.
"All hell broke loose," Rein said. "It went to my face and my skin swelled up. It spread like everywhere. "It was the most horrendous time."
It was only after researching her symptoms online that Rein realised she was experiencing topical steroid withdrawal (TSW). Topical steroid withdrawal occurs when the body becomes physically dependent on topical corticosteroids, triggering a severe rebound reaction when the medication is withdrawn. Symptoms can be worse than the original condition and may spread to areas that were never previously affected by eczema.
"It was painful, it burned, it itched," Rein said. "It was the scariest experience of my life. "Your body becomes so dependent on those drugs, it doesn't know what to do anymore once it's gone."
Frightened of restarting steroid treatment, Rein turned to advice shared by other sufferers online. Some, particularly on social media, encouraged people to stop using topical steroids entirely and endure TSW until the skin heals itself, a process that can take months or even years. Rein said this is the path she has chosen to take for the past two years.
While recovery has been slow and she still experiences eczema flare-ups, she said her skin is now in a much better condition. She has let her 'skin get back to basics' and makes sure to get plenty of rest. "What made topical steroid withdrawal particularly devastating was how much of my life it stripped away," Rein said. "I couldn't go out, couldn't work. I slowly lost parts of my independence, social life, relationships, and sense of self."
Rein now shares her journey on Instagram to help raise awareness about the condition. "When people understand how deeply this condition can affect someone, it creates more compassion and awareness for those going through it," Rein said. "And to show people this is real, and maybe offer some hope to others in knowing they are not alone. There are thousands of people suffering in silence. "I'm in a much more stable place now, but that period reshaped me, and speaking about it is my way of helping others feel less alone and maybe process my own experience too."
Rein said when she raised concerns with her doctors, many were unfamiliar with TSW. Eczema Support Australia said while TSW can be distressing, it is rare, and topical steroids remain safe and effective when used as prescribed. "While there have been reports of individuals who believe they have experienced TSW, the Australasian College of Dermatologists (ACD) and the Royal Australian College of General Practitioners (RACGP) emphasise that TSW is a very rare reaction," the organisation states on its website. "A far more common scenario is that the skin worsens after stopping steroid treatment due to the resurgence of eczema."
According to the website, Dr Adriene Lee, President of the ACD, said: "Topical steroid withdrawal is a very rare reaction. "What we often see when eczema worsens after stopping topical steroids is that the condition was under-treated, or the underlying eczema is resurfacing. "Anyone concerned about using topical steroids should discuss this with their GP or dermatologist."
Rein's story is a powerful reminder of the impact that topical steroid withdrawal can have on people's lives. While it is a rare reaction, it is crucial to raise awareness and offer support to those who may be experiencing it. Rein's journey is a testament to the resilience of the human spirit and the power of sharing our stories to help others.
