Charlotte Dacre used steroid creams for more than 20 years on the small patches of eczema under her knees and arms that she had since she was three years old.
But when her creams stopped working, she decided to stop taking her medications.
However, Charlotte suffered from localized steroid withdrawal (TSW), which caused her skin to burn.
The side effects were so bad that her boyfriend Harvey became her caregiver and she needed help washing and eating.
Charlotte, 24, a recruitment coordinator from London, said: “I was in so much pain that I would rather have died than continue to suffer so much pain.”
“I can’t even believe it now.” I’ve been begging the people around me to help me die, and that’s not me at all.
“I was very happy with my life and felt like I was in the best phase of my life.”
“But when you’re faced with so much pain every day, you lose sight of yourself.
“Harvey became a caregiver at the age of 24. “It wasn’t what we expected.”
Topical steroids, applied directly to the skin, are used to treat many different inflammatory skin conditions, including eczema. However, when long-term steroid use is stopped, some patients experience symptoms that are worse than the original condition, called TSW. Doctors don’t know exactly why this happens.
Within weeks of stopping the steroid cream, Charlotte said she experienced pain she had never experienced before.
Charlotte said, “I couldn’t physically move.” I had to be carried to the bathroom and fed by my mother.
‘My whole skin as an organ just gave out.’ It was a pain I didn’t even know was physically possible.
“It felt like I was being set on fire and being rolled through nettles at the same time.”
“People kept telling me, ‘Oh, just rest,’ but I couldn’t because I was lying on my skin.” It was cruel.
“I was completely unrecognizable. Even my grandmother didn’t recognize me.
“I was in so much pain that I didn’t care what I looked because I just wanted the pain to stop.”
Charlotte eventually developed erythroderma, a potentially fatal condition that causes 90% of the skin’s surface to become red and swollen, making her highly susceptible to infections.
The NHS website says that erythrodermic psoriasis can potentially lead to infection, dehydration, heart failure, hypothermia or malnutrition, and Patient UK classifies it as a ‘dermatological emergency’.
After she was taken to the hospital, a doctor had difficulty opening her eyes because they were so swollen.
“When they inserted the needle and gave me the antibiotics, my infection was so bad that they said it was unlikely they could save me,” she said.
“I had to take oral steroids or my skin would keep getting infected.”
Charlotte was given oral steroids for two weeks and lost almost two kilos, but recovered from sepsis.
After being weaned off oral steroids, she has since been prescribed an immunosuppressant drug typically used to treat cancer.
However, her risk of reinfection is now high and Charlotte is terrified of getting blood poisoning again after having another scare this summer.
Charlotte said: “I was in hospital in Turkey for a few hours before I got blood poisoning.”
‘It was scary. It’s almost impossible for me to prevent infection because I’m constantly scratching and the open cuts lead to blood poisoning.
“But you don’t even have to have open wounds; you can get the wound, just like your skin can’t protect anything that comes in.”
“That’s the most dangerous part of it. It just happens. Anything in the air can cause this if your body can’t protect you.”
The NHS website recommends stopping steroid treatment gradually to avoid withdrawal symptoms.
Please enable JavaScript to view this video and consider upgrading to a web browser that supports HTML5 videos
However, Charlotte feels that she was not properly warned by the doctors: “I didn’t take steroids every day, I took them exactly as the doctor prescribed.”
“There was absolutely no warning.
“I no longer felt like it was eczema, but no doctor could tell me what it was.”
NHS advice on local steroid withdrawal
If you stop using topical corticosteroids after long-term use (usually more than 12 months in adults), you may have a withdrawal reaction. These can sometimes be serious. To avoid this, your doctor may advise you to stop treatment gradually.
Withdrawal symptoms may include redness or changes in skin color (this may not be as noticeable on brown or black skin), burning, stinging, itching or peeling of the skin or oozing, open sores, or a flare-up of the condition you are having has. to have. treated.
If you have been using topical corticosteroids for a long time, you should ask your doctor to review your treatment.
“They just told me to take more steroids.” A doctor said I should just move abroad. That was the only advice they gave me.”
Blood poisoning has weakened her and some days she still has difficulty getting out of bed.
Charlotte said: “My message would be that there is a lot of misunderstanding because there is no accurate data on TSW.”
“It is registered as a rare disease, but many go undiagnosed.” More and more people are realizing that it is not just eczema.
“It’s a whole-body problem and the skin is only part of how it manifests.”
Sign up for our guide to London attractions, trusted reviews, great deals and competitions. The best parts of London straight to your inbox
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Source: Metro
Source: Metro
I am a highly experienced and well-connected journalist, with a focus on healthcare news. I have worked for several major news outlets, and currently work as an author at 24 news recorder. My work has been featured in many prestigious publications, and I have a wide network of contacts in the healthcare industry. I am highly passionate about my work, and strive to provide accurate and timely information to my readers.