Topical Steroid Withdrawal: The Hell of a Woman’s Hair Loss After Stopping Hydrocortisone Cream

A woman lost almost all of her hair and had to stop working out after she underwent severe topical steroid withdrawal (TSW) – after just months of using steroid creams.

Sharon Schott, 55, went through TSW after she stopped using hydrocortisone cream.

Sharon, from Colchester, Essex, was prescribed steroid tablets and creams to treat a spot on her neck, which she used for two weeks in February this year.

After just two weeks, Sharon decided to stop using the cream because it was giving her worse rashes.

Since she stopped working, Sharon has had a series of health problems and had to leave her job as a nursery assistant.

Sharon says TSW has turned her life around, and she wishes she had never used steroid creams in the first place.

She said: “I believe if I had never been prescribed oral steroids and creams, the original rash would have healed by now. It has changed me and my life.”

TSW is a reaction people experience when they stop using over-the-counter steroid creams – which are widely used as a treatment for eczema and other skin conditions.

Those who suffer from TSW can endure hair loss, insomnia, peeling skin, and pus-filled blisters among other problems.

The symptoms of TSW affected almost every aspect of Sharon’s life and had physical, emotional, social and financial repercussions.

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Sharon started using topical steroid creams in February, and has undergone several courses of oral steroids since March.

She has suffered complications since then.

Sharon used over-the-counter hydrocortisone cream to treat the rash on her neck.

In March, she was prescribed the same cream containing 1 and 2% miconazole to apply to her eyelids, neck and chest.

In April, she was given steroid ointment for the rest of her body.

The first signs of withdrawal appeared that month after she tried tapering from five to two pills a day.

Sharon Shute said she felt like her face was on fire while undergoing severe topical steroid withdrawal

(Sharon Schott/SWNS)

The withdrawals came back every time she tried to reduce her pill intake.

Sharon said: “I started feeling unwell in January of this year due to a water infection, followed by another illness at the beginning of February.

“While collecting the prescription, I asked the pharmacist about a spot on my neck and back that looked like a rash. He gave me a cortisol cream to use.

“In mid-April, the doctor prescribed a strong steroid ointment. I had a chest infection. I never seemed to get better, no matter what medication I took.

At the height of TSW, Sharon’s symptoms were severe and have not subsided since.

“My legs turn purple and swell,” she explained. My hands will swell. My ears will be blocked and I will be deaf all day. Insomnia, I was awake most nights with itchy skin.

“Sometimes I would wake up and couldn’t move my head and face because the skin was so dry and tight. My eyes were dry, and sometimes it was difficult to blink.”

Sharon added: “Fast forward to July I was back in hospital with a letter from my GP saying I needed to be admitted.

“The rash covered most of my body and a case of erythroderma was life-threatening.

“I felt like I was burning.

“The lowest point for me was when I smiled at the grandchildren of one of the patients who were visiting me, and they turned away because they were afraid of my face.”

It is unfortunate that Sharon does not see much hope in finding a cure, as treatment varies from one patient to another, but she pledged to raise awareness of this condition.

Currently, she is experiencing burning red arms and legs, tearing skin, and purple legs and hands when she stands or walks for a long period of time.

Furthermore, she is still unable to regulate her body temperature and has lost almost all of her hair and it is still falling out.

Since having to step down from her nursery role, she has been living on statutory sick pay – £109.40 a week.

Her seasonal work contract expires in October, and the social support program will likely be halted, leaving her without income for at least three months.

Sharon took to social media to raise awareness and share her ordeal.

“Honestly, it’s hard to see a future where I won’t be sick,” she said. “It really frustrates me. I hope my new medication, methotrexate, will improve my condition.”

“I couldn’t bear the thought of other people, including babies and children, going through TSW.”

She is now waiting for the results of a skin biopsy while on a course of methotrexate and has no idea when she will get better.

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