A woman whose skin condition spiralled out of control after she stopped using steroid cream says it has destroyed her life.
Ineta Petraityte has been left housebound and in constant pain after developing Topical Steroid Withdrawal (TSW).
After years of using the drug to treat eczema, the 33-year-old’s skin suddenly stopped responding to the treatment.
Ineta began breaking out in red, weeping rashes and open wounds and developed an unbearable, deep itch.
Her hair also severely thinned, she lost more than three stone and became too weak to stand for long.
She spent her nights pacing in agony or lying on the floor in tears.
The condition also put immense pressure on her personal life.
Ineta had recently moved to Texas from London to be with her partner, but the relationship broke down shortly after her health began to decline.
“It’s the most horrific thing I’ve been through,” Ineta told Need To Know.
“You literally have to grieve your old self because you’ll never be the same again – it’s very traumatic.
“I couldn’t leave my bed and didn’t leave the house for three months.
“This condition is dehumanising.”
Originally from Lithuania, Ineta had been using topical steroids on and off since she was 16.
But by the end of 2023, her eczema worsened, seeing she used the cream around five times a day for a year.
Ineta claims she was never warned of the long-term dangers of using steroid creams consistently.
She said: “I went and picked it up in the pharmacy without being checked by a doctor or dermatologist.
“No one knows how much someone is using – that’s where the problem stems from.
“I had a stressful job that needed care and attention, and I used it for way longer than I should have.
“I knew it was a strong cream but I definitely didn’t know it thins the skin or would give me the horrific symptoms that it has done.”
Topical Steroid Withdrawal (TSW) is a severe skin reaction that can happen when someone stops using steroid creams after long-term use.
The skin flares up – often with burning, itching, redness and oozing.
Ineta, who worked for a life coach company before she became unwell, says she had no idea what was happening to her body until Christmas 2024.
A desperate Google image search led her to TSW.
That’s when it all clicked – the creams she’d been using were harming her instead of helping her.
Ineta says the problem initially started as red rashes before developing into weeping skin.
It then became dry and flaky and her hair started severely thinning.
She said: “My hair was touching my bum – it was nice and blonde.
“Now it’s just below [my] ears because I had to cut a lot of it off.”
Sadly, Ineta is still in the grips of TSW and struggling with cracked skin, weeping wounds and itchiness every day.
She recently moved to the Cayman Islands in the Caribbean to try “sun and sea therapy”.
While the saltwater stings her skin, she hopes the natural and warm climate will help her recover.
She’s also set up a GoFundMe appeal to help fund her health journey.
Ineta said: “I have to vacuum the bed every morning because I leave a Hansel and Gretel trail of flakes everywhere.
“I have complete insomnia now – I sleep every third night.
“But I hope that my move to the Cayman Islands will see my skin improve.
“After a challenging journey, I am now on the mend and steadily improving.
“Recovery from TSW is often a slow and difficult process, but many – myself included – start to see real progress around the one-year mark.
“It’s important for others going through this to know that while the symptoms can be intense and debilitating, healing is possible with time.
“I’m sharing my experience to offer hope and to raise awareness about the typical recovery timeline that so many in the TSW community endure.
“Despite what I am going through, I take comfort in sharing my story because I want to help others.
“People need to know that these creams offer temporary relief but potentially permanent regret.
“Consult a doctor before you start using them.
“One tube too far can scar for life.”
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