Man who suffered childhood eczema shares his battle with topical steroid withdrawal: “My whole life has turned upside down”
- Replies 4
A young man from NSW who suffered from eczema at a young age shares his story on how he was left with painful flaky skin when he stopped using topical steroids for medication.
Jordan Hendey in 2016. Credit: 7News.
Jordan Hendey says he suffered from eczema since the day he was born.
“I had little patches on my face and little areas around my body,” he said, recalling how he had to dress in long knits and mitts to prevent himself from over scratching.
He was only four years old when he started using the steroid cream treatment, which he would often rely on to relieve the incessant itching.
During that time, Jordan and his family thought the steroids would help with his condition. “It never crossed my mind that it could potentially make my skin worse,” he admitted.
Jordan was twelve years old when his eczema started spreading to previously unaffected areas of his body.
“Over the next five years, I noticed it was appearing in more places and in random spots like in front of my legs, knees, torso and arms. It started to become more generalised,” he said.
Credit: 7News.
It was in 2016 when the 20-year-old Jordan decided to stop the treatment.
“I decided I’d had enough with using the cream so I went cold turkey,” he said, having no idea that his skin condition would go from bad to worse.
After abstaining from the topical creams, he noticed that more parts of his body were impacted and his skin became drier, to the point that it became sensitive and red-coloured from all the shedding and flaking.
Then, he found out that his skin was ‘addicted’ to the topical steroids, and he was suffering from topical steroid withdrawal.
“I used to walk up to the mirror and feel sad. It was very depressing. It was a shock,” said Jordan.
Shortly after, Jordan was called to the hospital for an emergency after they detected he was suffering from two blood infections.
“I could have died,” said Jordan.
Apparently, the doctors didn’t believe him when he told them about his withdrawal. “They said it’s just a bad flare-up, they didn’t think topical steroid withdrawal was a thing. It was really frustrating,” he said.
After the incident, Jordan went back on the steroid cream, following doctors’ advice.
Credit: 7News.
“They loaded me up with moisturiser and I was on antibiotics and strong steroids for a month,” Jordan said. “My skin was a lot better.”
But it wasn’t long before the steroids he was using were becoming ‘less effective’. At this point, Jordan said that nothing has been really working for him.
“I ended up with eczema all over my entire body. I had to find other ways to get off the steroids.”
So, two years ago, Jordan started to get off steroids by gradually tapering off them.
And just days before Christmas last year, he ditched the steroid cream completely.
Credit: 7News.
Jordan saw his ‘light at the end of the tunnel’ when he found the No Moisture Treatment, developed by a Japanese dermatologist. It works by purposely ‘drying out the skin’ to allow the body to create its own moisture.
“Once I found the treatment, I was a whole lot more positive,” he said. “People who do the process take three months to heal. But for me, I’m expecting six months or longer.”
And ever since starting the treatment, Jordan said his skin isn’t swelling or “oozing” as much as before.
“It’s flaking a lot less and I’m not as red - but it’s still extremely uncomfortable,” he said.
“My whole life has turned upside down, it’s a hard battle to go through.”
However, Jordan remains hopeful after everything he has gone through.
“I’m going to see improvements and I’m hoping to come out the other side a lot healthier – but it’s going to take time,” said the 26-year-old.
“I want people to know how dangerous topical steroids can be if they are abused,” he added, hoping that his story would raise awareness against the life-changing symptoms of topical steroid withdrawal.
If you’re looking to read more about the ‘No Moisture Treatment’, you might want to check this video below, which talks about the pros and cons of doing this type of programme.
Credit: Leila’s Eczema
For our members who may have been in similar situations, we must advise that what worked for Jordan may not work for everyone. We must stress that you NEED to seek guidance from medical healthcare professionals to know what’s best for you and your family.