By Alyce Collins
AFTER learning about TOPICAL STEROID WITHDRAWAL through Instagram this woman quit the steroids which doctors had prescribed her for over a DECADE – but now she faces stares in public as people fear that her condition is CONTAGIOUS.
Council worker, Irene Tempelaars (29) from Nijmegen, Netherlands, was only 10 years old when she and her parents noticed patches of eczema forming on her arms before being prescribed her first steroid cream by her GP.
As she was young, Irene was only prescribed a low potent steroid to control her eczema, but as the years progressed and she consistently returned to her GP with worse eczema, the GP would simply prescribe a stronger steroid cream.
Irene’s eczema spread to behind her knees, her neck, back, stomach and hands, but the stronger creams seemed to be her only option. Irene started off using Hydrocortisone, a mild steroid, to later using the potent steroid Betamethasone Valerate for over 10 years.
At times, Irene tried to phase out the steroid creams, but her eczema became worse and dermatologists would just suggest another steroid. In 2009, Irene tried to use tar ointments to control her eczema, unfortunately they didn’t have a significant effect.
By the summer of 2018, Irene’s eczema had spread to her face and it was getting itchier and more painful across the rest of her body. The eczema was soon covering all of her body apart from her lower legs and feet as the steroid creams stopped working and could no longer control Irene’s eczema.
In need of a new solution, Irene searched the hashtag ‘eczema’ on Instagram and came across profiles of people who were going through Topical Steroid Withdrawal (TSW). The images showed the pain that sufferers endure, but they showed Irene that steroids weren’t her only option, leading her to stop using them on November 25, 2018.
“My eczema started with a few patches on my arms, so my mum took me to the GP,” said Irene.
“I was prescribed a low potent steroid cream to control it. However, as the years passed my eczema appeared on the skin behind my knees, my neck, back, stomach and hands.
“During this time, I visited several dermatologists and every time my eczema got worse or spread to another part of my body, they gave me stronger steroids.
“I started with Hydrocortisone, which is a mild steroid, and by the time I stopped using steroid creams I had been using Betamethasone Valerate for over 10 years. I was always told to only use the creams for a maximum of four days in a row, so that’s what I did.
“I’ve tried to phase out the steroid creams but then my eczema would just get worse so I would see a dermatologist again who prescribed stronger steroid creams.
“About 10 years ago, I even tried tar ointments to control my eczema, which sadly didn’t work. This treatment entailed nurses rubbing my body with tar ointment and then applying bandages all over my body.
“In the beginning it seemed to work, but I was also using potent steroid cream four times a week, so I don’t really know if it was the tar ointments or the steroid cream which was helping my skin. After a while my skin stabilised. I still had eczema, but I could control it with the potent steroid cream, so I didn’t have to go to the hospital anymore.
“Over the years, my eczema covered my whole body except for my lower legs and feet. Sometimes I was completely covered and sometimes I had a few patches which disappeared after a while. However, the worst parts were always my arms, upper back, neck and hands.
“In the summer of 2018 I noticed the eczema was spreading to my face. It started with a small spot on my forehead, but the eczema soon spread to my eyelids, temples and upper lip. I felt super frustrated and I didn’t understand why my body couldn’t just behave.”
Irene didn’t like having to be so heavily reliant on steroids creams, leading her to look for help on Instagram. Finding other people who had been prescribed steroids for as long as she had helped Irene to feel less alone and it inspired her to quit all steroids permanently.
TSW has been very difficult for Irene to come to terms with over the last six months, but she is hopefully that her new approach will help control her eczema long-term, despite the stares she occasionally gets for her current appearance.
“I’ve always had a hard time accepting that my eczema was incurable. I tried so many things, like non-steroid creams, mindfulness, supplements and diets, but nothing seemed to work,” said Irene.
“When my eczema got worse in 2018, I searched ‘eczema’ on Instagram, hoping to find a solution. I didn’t want to visit another dermatologist because all they ever did was prescribe more steroid creams and tell me to live with it.
“The images on the internet of people going through TSW are horrendous. After learning about TSW, you also learn that it’s different for everybody. If you’re lucky, you’ll heal in a couple of months, but in most cases it will take a year before you start to get better.
“I think the uncertainty is one of the hardest parts about TSW. It’s a rollercoaster, you never know how you’ll wake up in the morning, when the healing will start or whether it’s going to last. When someone tells you it will take six months before you’re healed, you can adjust to that. But with TSW, no one can tell you how long it will take to heal.
“My eczema spread all over my face when I gave the steroids up. I started oozing in random places and my skin was hot, painful and got so tight it would rip open. It feels like your skin is five times too small and it’s being stretched around you.
“I was used to itchiness because of my eczema but nothing can prepare you for the intense itch TSW causes. It makes you want scratch your skin to the bone. Some other thing I experienced when I stopped using steroids were swollen eyelids and lymph nodes, insomnia, zero energy and joint pain. I also had a hard time regulating my body temperature.
“I’m very open about TSW to my friends and family so they never comment on my skin in a negative way. Although I do notice people watching when I go food shopping and sometimes the cashier hesitates to give me the receipt. I think it’s because she’s afraid it’s contagious. I wish people would just ask so I could explain that it isn’t.
“Dermatologists are under a lot of pressure so they don’t have time to search for an underlying cause and they assume steroid creams will work. In the beginning, the creams will work for a lot of people so they don’t see the patients again so they presume they’ve healed.
“I think most doctors are simply unaware of the long-term damage topical steroids can do to our bodies. Steroids are a great way to handle eczema if you want a quick fix, but they aren’t sustainable.
“For people dealing with eczema or another skin condition, I know it’s hard and you may feel frustrated, like your body is failing you, but please be critical about what you put on your skin. If I knew what topical steroids could do to my body, I wouldn’t have used them.
“It’s ok to be critical towards doctors but don’t disrespect them. They are only human, and they can’t know everything. Try to keep the dialogue about TSW open and respectful so you can learn from each other.”
To see more, visit www.instagram.com/itchy_irene