Woman who stopped eczema steroids talks about how painful it was
Woman whose skin became addicted to steroid medication to treat eczema is left with lizard-like skin and scabs all over her face while showering feels like acid is being poured on her body
- Megan Crome, 25, from London, suffered from extremely painful eczema
- The steroid treatment she was taking stopped working, had rash on her arms
- Decided to stop taking the treatment to break cycle of Topical Steroid Addiction
- Said it was so painful, she was left unable to take showers, because felt like acid
A woman whose skin became ‘addicted’ to steroid medication used to treat eczema has revealed how showering felt like acid being poured over her skin after withdrawal from the drugs left her with lizard-like skin and scabs all over her face.
Digital marketing assistant Megan Crome, 25, from London, was first diagnosed with eczema when she was six-years-old, which grew worse throughout the years and culminated during her GCSEs.
After years of navigating several treatments for her condition, she developed a resistance to the steroid treatments she had taken to treat her painful eczema, and realised she suffered from Topical Steroid Addiction (TSA).
Her body, including her face, was red and swollen and began scabbing. This prompted Megan to stop using steroid treatments for her eczema altogether, but this came at a painful cost.
Her flaky, ‘lizard’-like skin felt so painful, Megan couldn’t take a shower because the water felt like acid on her body and can only wash doing ‘sponge baths.’ She also had to move back with her mother, and suffers from low moods.
Megan Crome, 25, from London, decided to stop her steroid cream treatment cold turkey after realising she was addicted to her eczema treatment, which had become less effective. Pictured before her topical steroid withdrawal, when she was still using steroids to treat her eczema
Megan said she was initially prescribed hydrocortisone, followed by a stronger cream called betnovate to treat her eczema behind her knees and on her inner elbows as a child.
During her GCSEs, her eczema began worsening to the point where she was suffering immensely. She believed this was triggered by stress and was informed by her doctor to control her worsening condition with more steroid creams, but these didn’t have much effect.
She was placed on elocon at 18-years-old to help her rashes from spreading out of control and was later placed on a protopic for her face which was an immunosuppressant.
‘All of this medication was given to me to help treat worsening eczema which started getting out of control whilst I was in school doing my GCSEs and I remember suffering immensely,’ Megan said.
Pictured: Megan at one of the most painful point of Topical Steroid Withdrawal. She revealed she couldn’t take showers, and could also take sponge baths to limit the amount of moisture on her skin
‘Stress was definitely a factor, but I was told to control it with steroid creams which ultimately didn’t seem to have much effect,’ she added.
Despite this, Megan remembers developing ‘red sleeves’ which is a common symptom of Topical Steroid Addiction (TSA) and was confused, because her eczema had never presented itself like this before.
She recalls her arms feeling hot to the touch and her skin began to swell. Shortly after, her skin began to weep and scab over due to her whole body being scratched red raw, where her face was engulfed in thick scabs.
In February 2021, she was continuously prone to infections on her face and decided to research her symptoms.
She came across Topical Steroid Withdrawal (TSW) – which causes severe symptoms such as redness of the skin and shedding in prolonged steroid users – on Facebook, and realise that she was going through topical steroid addiction – which usually occurs when steroids are overused and creates an adverse effect on the skin.
A picture of Megan’s elbow during her TSW. She said she felt like a lizard shedding because of her flaked skin
‘I believe the steroids given to me absolutely exacerbated my skin problems without me even realising. I think I went through topical steroid withdrawal for the first time in college, because I remember trying to use natural products instead and went through hell with it for around eight months,’ Megan said.
‘All of these groups told me about the journey I had ahead if I were to quit cold turkey and that’s exactly what I did on the same day where I ceased using moisturisers as well, in an attempt to get through the worst as quickly as possible.’
Within a few days, Megan noticed a red rash spreading all over her body and also experienced thermoregulation issues.
‘I had burning, hot skin, but felt freezing cold inside, extreme flaking which made me feel like a lizard shedding its skin, as well as insomnia where I wasn’t able to lay still or relax for any longer than five seconds,’ she said.
Megan pictured with her parents at her university graduation, when her eczema had worsened. She moved back in with their during her Topical Steroid Withdrawal
Pictured: Megan before. Prior to TSW, Megan was very independent and loved her job, but now she has to stay home with her parents
‘I also experienced sharp and sudden sensations in random places that jolted me awake and extreme pain everywhere due to my skin cracking, that left me unable to bend my knees and arms,’ she added.
Megan has been unable to shower because it feels like acid is being poured on her skin and has experienced low moods where she despairs about her condition. Instead, she takes daily sponge baths to minimise moisture contact.
‘Although I was unable to shower as it felt like acid was being poured over my skin, I was just about able to tolerate a nice salt bath which I loved,’ she said.
‘I think the most taxing symptom though, was the low mood – when I was flaring badly. I would cry about four or five times a day in despair about my condition because I just wanted to live my life and be comfortable,’ she revealed.
‘All of these symptoms made me feel absolutely awful as I was suffering every second of the day for three months straight. I always had pain somewhere and couldn’t make my own meals, go out or do simple tasks due to this,’ she said.
‘I didn’t recognise myself in the mirror for months and my whole face was just damaged skin that was inflamed and falling off – it was absolute hell and thinking back on it now, it is very upsetting as it was quite traumatic,’ she admitted.
Due to her traumatic ordeal, she had to move back home with her mother Claire, 54, take time off work and stop seeing her friends, which has shattered her quality of life. Despite this, her friends and family have been extremely understanding.
‘I think my worst memory is when my face was scabbed up and my boyfriend had wrapped my head in bandages to try and protect the scabs,’ she said.
‘My parents were coming to visit us that day and we were going to go for a nice walk and get some lunch – but instead, they came in to me bandaged up and barely able to move.
‘TSW absolutely shattered my quality of life. I had to take time off work, stop seeing my friends and move back home. All I could do was lay in bed and try to find a position that was somewhat comfortable without any of my open wounds touching the bed.
‘My friends have been very understanding, but I have missed out on a lot of time with them and I do worry about how this will affect my relationship with them going forward.
‘At first, I don’t think they really understood just how bad I was and some got frustrated because they couldn’t understand why I wasn’t able to see them – but after seeing photos of what I was like, they understood.
She revealed she had to put her job on hold while she got better because she couldn’t concentrate on anything else.
‘It was very upsetting having to make all of these decisions, but I had to surrender and accept what was going on,’ she said.
Megan also revealed her friends had been supportive of her condition, but that the trauma had affected her mental health.
The eczema sufferer, pictured before, left and now, right, tried several steroid creams throughout her life in order to help with her symptoms
‘My friends have come to visit me since my condition worsened and at the beginning, I was happy to go out in public when my face was just flaky as I had a mask on most of the time, so no-one made any comments,’ she said.
‘Despite this, the trauma has affected my mental health massively and I have since reached out for therapy to help me build the confidence to do normal things again without worrying.
‘I’m a very upbeat and positive person, but it’s hard to stay positive when you’re suffering every second of the day,’ she added.
But Megan said she had found support groups on Facebook, which had been an ‘absolute lifeline’ where people told her to keep going and not give up.
‘I’m glad I found the support groups on Facebook though, as they have been an absolute lifeline due to people telling me to keep going and not to give up.’
Through one of the support groups she discovered, Megan became aware of No Moisture Treatment (NMT), which aims to help speed up the recovery process caused by prolonged use of topical steroids, by pushing the body to create its own natural oils, instead of ones produced by medication.
‘According to others, this is the short and brutal route and although my face became a giant scab, the healing was visible.
‘I do believe that not putting anything on my skin allowed all the damage to come out quicker than if I were to moisturise and push it all back in.
While recovering from TSW had been ‘horrendous,’ Megan said she felt it had been ‘character building.’
‘I will never forget this experience and I can’t wait for it to be a blur of a memory – it makes me so sad that thousands more will have to go through this, though, ‘ she said.
‘Currently, I’m eating super healthy and have cut out dairy, wheat and gluten as well as taking vitamins and fish oil everyday,’ she added.
Megan pictured at the height of her TWS, with her scaled and inflamed skin flaking on her face
The digital marketing assistance with flaked skin all over her face after weeks of suffering from TSW
Megan with flaked skin. She said she had to take time off work because of her condition, and that TSW has deeply affected her mental well-being
While on her latest form of treatment for eczema, Megan developed ‘red skin’ a common sign of TSW, and decided to stop using steroid to treat her skin
‘I’m also doing a course of homeopathy which I think is helping – but ultimately, it’s all about time and I’m lucky to have seen an improvement this early on.
Megan said she wanted to raise awareness about Topical Steroid Withdrawal, and the fact doctors shouldn’t prescribe steroids all the time.
‘I feel so strongly that doctors need to be educated on the effects of steroids and stop handing them out for anything and everything,’ she said.
WHAT IS TOPICAL STEROID ADDICTION?
Topical steroid addiction arises from the use of such creams to treat conditions like eczema.
First described in 1979 in the International Journal of Dermatology, the theory is, over time, the skin becomes ‘addicted’ to the steroids. But it is not widely accepted among the medical community.
Many have called the ‘condition’ a fad, however, it has been recognised by the National Eczema Association since 2013.
Also known as red skin syndrome, the disorder does not have many statistics to show how common it is. One 2003 study from Japan, found that 12 per cent of adults who were taking steroids to treat dermatitis developed RSS.
It occurs when steroids have been abruptly discontinued after a prolonged or inappropriate length of administration. Women who blush easily are thought to be most at risk.
Topical steroid addiction has not been reported with correct drug use.
- Redness, particularly on the face, genitals and area where the steroids were applied
- Thickened skin
- Swelling and puffiness
- Burning or stinging
- Dryness and cracked skin
- Excessive wrinkling
- Skin sensitivity and intolerance to moisturisers
- Frequent skin infections
Excessive sweating and itching is a sign of recovery. Many sufferers also develop insomnia.
Treatment focuses on anxiety support, sleep aids, itch management, infection prevention and immunosuppressants.
Doctors should advise patients to avoid long term or high dose steroid use. Long term is considered to be one-to-two years of regular use.
Patients are also advised to cut down on steroids slowly but using a lower dose and gradually cutting back to, for example, every other day or a few times a week.
Source: DermNet NZ
‘I want to raise awareness for this condition to stop others going through what I, and sadly thousands of others, have done. It’s just become an accepted condition in the UK, but many doctors don’t believe in it and just say that it’s worsening eczema,’ she added.
‘If that’s the case, then why have so many people completely healed after stopping the creams, when they have been told that they would have “eczema’ forever – it makes no sense,’ she claimed.
‘If you’ve got a tube of steroid cream in your house and you find yourself reaching for it every few days, do you think you could manage without it? If the answer is no, then look into topical steroid addiction, as it’s a lot more common than doctors realise,’ she said.
Using steroid creams gave Megan, pictured before, the illusion that her skin was healed, but she had entered a cycle of non-stop flare ups
Megan before. the 25-year-old said she had had to stop seeing her friends when her TSW reached its highest and most painful point
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