Young woman left in 'agony', housebound and unable to sleep after coming off steroid cream
Roisin Gauson spoke to Katie Bisson...
A woman in her early 20s was housebound and unable to sleep because of the effects of coming off steroid cream.
Katie Bisson from Guernsey was four months into her dream job as a trainee solicitor when she encountered a health crisis.
After coming off the steroid cream she used to treat her eczema, Katie was diagnosed with Topical Steroid Withdrawal.
She could not sleep and function as before - finding herself completely withdrawn and on long term sickness leave.
The condition causes incredibly painful and itchy skin as a result of coming of the steroids.
Symptoms can also include fevers, insomnia, oozing sores, swelling, muscle spams, vulnerability to infection and more.
"On top of the physical symptoms, most sufferers are affected by the isolation, anxiety and depression that comes with it," Katie added.
"It is incredibly difficult to cope with emotionally".
Katie was unaware of this condition when it developed and even applied more steroid cream due to her lack of awareness about it causing her symptoms.
She was using the weakest potency creams as prescribed by her doctor and applying the recommended amount.
Katie said: "I was told it was completely safe to use in the manner I was prescribed and that my worries were unfounded.
"I read about Topical Steroid Withdrawal at the end of 2022 and became very concerned about my steroid use...I did not anticipate that the damage had already been done and that I would be TSW’s next victim".
She says that her doctor did not mention the condition.
"I felt let down," she said.
"I felt let down by the medical profession, I felt let down by the pharmaceutical industry because it's not emphasised as a side effect.
"Most people had never heard of it. It's only in the last couple of years that it's gone in the news and on social media that people even know it exists.
"My body had turned into a burning, oozing mess. I was in so much pain and absolutely petrified...open sores covered about 80% of my body".
Katie began to work from home, but found herself uncomfortable from the friction of sitting on surfaces, putting on clothes and experienced exhaustion.
Showers and bathing also caused "agony".
She said: "During my worst months, my skin was oozing so much liquid that I was having to sleep wrapped in towels and change those towels up to four times per night because they would become so saturated with fluid."
She turned to Dr Sue Wilson, a retired GP, who has been working with Katie since.
Dr Wilson said: "I’d never heard of it, I’d never seen it.
"I’d seen bad eczema and so I may have come across it before without knowing that I was coming across it – but this was the first time that I’d ever heard of steroid withdrawal syndrome.
"I think steroids are great when we use them in small amounts for a small period of time to settle down inflammation...but if we use them longer then people are at risk of this condition."
For most people, TSW can take years to recover from.
Professor Celia Moss, from the National Eczema Society, told ITV News: "All the social media stuff is fuelling panic.
"Patients who come to hospital, parents of children with eczema need a lot of reassurance at the moment that topical steroids can be used safely and effectively and that is unfortunate, but at the same time there is something there.
"There’s certainly a condition that patients are experiencing and are suffering from and we need to work out why they’re getting it, who gets it and what it is exactly about topical steroids that cause it and which ones cause it."
Katie has seen some improvement in recent months, saying she's "started to get a little bit of my life back" and is able to take "trips to the shop or slow walks at the park".
Dr Wilson expressed her admiration, saying: "Last time I was Katie she looked so much better, she looked so well and all credit to her.
"It’s been a very interesting and rewarding journey with a very special human being."
Katie is now using her story to raise awareness of Topical Steroid Withdrawal so that others do not have to face the same.
Katie said: "There will be so many people out there who believe they are battling severe eczema and are continuing to use the medicine that is making them sick, without even realising it.
"There will be so many doctors unable to provide the support their patients need because they do not know about this condition.
"I absolutely would not have risked losing a year or two of my life for the sake of a few small itchy patches.
"There were so many other things I could have done to address the issue, and that will always be my biggest regret in life".
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