Karyn Flett first began using steroid treatment when she was 10 – 40 years on she says it has ‘ruined her life’
A mum says an eczema treatment left her living a life of agony with crusty, unsightly skin. Karyn Flett says the steroid creams she used for 40 years have “ruined” her life.
Now 54, she first began using topical steroids to control her eczema when she was 10 years old. And since then she has relied on repeat prescriptions to deal with her condition.
She says she finally stopped using them three years ago, but since then has noticed her symptoms getting much worse. The mum suffers from topical steroid withdrawal (TSW), which has left her skin raw, oozing and cracked.
Karyn, from Fyfe in Scotland says she was so traumatised by the effect on her skin it gave her PTSD . She says she spent three years in at home in bed because of the “excruciating” pain.
She explains: “It has affected my life in every way. My skin has always been an issue all through life.
“It has ruined my life in every way – I have had to give up my beauty business that I have built over 16 years ago and had to stop working three years ago. It is absolutely excruciatingly painful.
“The visual aspect of it has given me PTSD. I no longer even share a room with my husband anymore because it was triggering to have any body heat next to me.”
Topical steroids are one of the most prescribed medications by GPs. They are used to treat a range of skin conditions including eczema.
However when long-term steroid use stops, it can leave some patients with worse symptoms than their original condition. This is known as topical steroid withdrawal (TSW).
Karyn says the creams have given her steroid induced eczema which has led to her condition worsening through her adulthood. She says despite people knowing how to use the creams they “are not designed for long term use” but patients are “using them as instructed by their dermatologist”.
She says: “I just basically had allergies – grass and pollen. I only had a small irritation patch that had come up so of course the first line was being given topical steroids.
“Throughout history, like it happens to nearly everyone, the steroid creams do not get to the route of the problem. The problem would have been better to have been treated naturally and just avoiding allergens and irritants and moistorising.”
Karyn says her skin got worse and gave her widespread burning, red sleeves and an increased allergic response. When she applied her topic steroids her skin would burn and would start to go into a “frenzied itch”.
She says she then realised it was red skin syndrome, also known as topical steroid addiction (TSA). Karyn finally stopped using the creams in August 2022 but her deteriorating health meant she had to stop working.
She explains: “My body shut down within days. I have spent nearly over a year being bedbound unable to move from bed. I have needed to be cared for.”
She says her husband has had to have time off work while her youngest daughter was due to move out but stayed at home for an extra year to help look after her mum.
Patients and doctors are increasingly calling for more research into the treatment with some studies already being carried out. Karyn says she and others are suffering debilitating reactions that are worse than their original condition.
Despite her skin being better now due to the use of a strong immunosuppressant, often used for transplant or cancer patients, the medication can come with side effects which mean she will not be able to keep on using it.
Karyn reiterates that TSW healing is not “linear” as it continues throughout months and years. She said: “I expect to maybe revert back to being unwell once I’m tapered off the immunosuppressant in July.
“I’m just having symptoms managed but the drug that I’m taking is severe with awful side effects that can come with it, hence I can’t stay on it. My dermatologist doesn’t let me.”
Karyn found others with similar symptoms on TikTok where she is telling her story, receiving messages from people across the globe with the same symptoms and struggles as her. “There’s babies suffering from this and young people suffering from this,” she added.
A new study by researchers at the National Institutes of Health (NIH) determined that dermatitis resulting from TSW is distinct from eczema and is caused by an excess of an essential chemical compound in the body. This chemical, nicotinamide adenine dinucleotide (NAD+), is a form of vitamin B3. Karyn is hoping this new study will help bring change for those suffering from skin conditions.
According to the National Eczema Society topical steroids are recommended by the NHS for treating eczema flare-ups and have been used for over 70 years. To follow Karyn’s journey on topical steroid withdrawal check her Instagram on flawless_by_karyn_f and TikTok on @kflett3