Corticosteroids are a valuable tool for medical professionals but some patients say they have become addicted. Photo / 123rf
Corticosteroids are a valuable tool for medical professionals but some patients say they have become addicted. Photo / 123rf
* A fake name is used in the following story as the victim wanted to remain anonymous
After years of treating their skin with corticosteroids (topical steroids), two Northlanders have given up promotions and struggle with basic daily functions as they have become afflicted with what is commonly called Topical Steroid Withdrawal.
They have developed Topical Steroid Withdrawal (TSW) as a result of the overuse of the commonly prescribed ointments and creams, resulting in a painful withdrawal process that has stolen valuable years of their life.
Dermatologists say TSW is difficult to diagnose and those suffering need to get a professional opinion.
But in a region where there are no permanent dermatologists and it can take around eight months to get answers, it’s often a matter of suffering in silence.
Matt* says using corticosteroids to treat his eczema from an early age resulted in an addiction.
After he moved to Whangārei in his late twenties, his skin flared significantly and his GP referred him to a dermatologist, who prescribed a strong steroid ointment.
“It was a bit of a downward spiral, I got caught in the trap of constantly using it.”
Matt had been aware of TSW before starting the treatment and said his dermatologist had laid any concerns to rest.
“He said it’s highly unlikely, it’s rare, not really understood and if you follow the course of treatment, you shouldn’t have a problem.”
Four days into a trip down south he knew there was one.
“I was like ‘oh God, I really need those creams’. I felt like a drug addict.
I went to the pharmacy, and I said ‘hey, I need these’ and the lady talked to me about the warnings with that and asked me if I was going to use it on my face.”
“I said yes, and she got quite concerned.”
That was the pivotal point for him.
“It didn’t take long to see TSW as something that I was quite likely going to have to go through.”
Matt and his wife discussed their options, and he started withdrawing after their wedding.
It resulted in inflamed skin, an unbearable itch, burning and trouble with temperature regulation.
He relapsed after three months, which resulted in a bad flare, so he’s been back in withdrawal ever since.
Northlander Matt* has been suffering from Topical Steroid Withdrawal since the beginning of this year after recognising he had an addiction.
“I love sports, surfing, football, and all that’s been given up. It’s affected my mental health, my work, employment. I’ve had to give up on promotional opportunities because of the stress it would bring.”
One option for Matt is to go on immunosuppressants, but the couple want to try to conceive, which is not recommended on the medication.
The fallout from steroid use “well and truly” controls his life.
Whangārei woman Maureen has been using corticosteroids on and off since the age of 6.
At the time of her youth, an expert said Betnovate was the “miracle” and going to “cure eczema”.
“I’ve barely left the apartment. I have great intentions of going places but then I’m just exhausted or I look in the mirror.”
The basics of life, such as as working or cleaning the house, are painful and near impossible.
“There are all these things that are sitting around, and the house gets messier and messier,” she said.
She wants to see more caution taken with prescribing steroid medication.
“I think they [GPs] need to stop prescribing it as much as they do. And I think the patient needs to know what it means and what the possibilities are.
Dermatologist Louise Reiche said prolonged use of steroid medication can increase the risk of harm and suppress the body’s natural cortisol production.
Sometimes addiction can result if a diagnosis is incorrect and the treatment is inappropriate, she said.
“It’s about education, and that’s the education of both patients and health practitioners.”
Access to allergy and other testing increases the likelihood of getting the right answers, but she acknowledged it was difficult with a health system under stress.
She said GPs were trying to get quicker solutions for more people that led to damaging consequences for some.
Reiche encouraged patients to advocate for themselves if they were concerned - but also made sure to mention that a rigid view as to what they have can be unhelpful.
“At the end of the day, the simple thing is, ‘I want to get better’.”
Prevention and treatment of Topical Steroid Withdrawal is multi-faceted and can be difficult to diagnose. Photo / 123rf
Dr Gary Payinda, who works at Whangārei emergency department, said there are “legitimate and appropriate” uses for steroids.
But if someone is using high-potency or long-term they need “close specialist input”.
“The biggest danger is that people are not able to get access to the system.”
Paediatric dermatologist Diana Purvis said she has seen several young people suffering from rebound reactions from steroid use.
“It’s a complex condition, and I don’t think we really understand [yet] how common it is. There is not a clear way to diagnose, there’s not a clear test you can do.”
