Emily Banks is a dental therapist and lecturer at Cardiff Dental School with an interest in paediatrics and continuing opportunities for dental care professionals. In this article Emily describes her experiences with topical steroid addiction and withdrawal and how it has affected her.

figure 1

©David Wall/Moment/Getty Images Plus

As a dental therapy student, you could spot me on clinics or labs from a distance. Usually identified by my brightly coloured dyed hair, altering colour week on week, or you could hear me giggling with my colleagues. My identity was aligned with my kooky hair styles and my fun, bubbly nature. Ten years on from qualification, my health issues radically changed what I thought I knew about my identity and my resilience.

After working in the community dental service and in practice as a dental therapist for many years, I had gained ‘work families' that looked out for each other's needs. When my skin first exhibited signs of problems, my colleagues all ran to my aid to make sure I felt comfortable and healthy to continue in my role, a job I loved so much. As I was mainly treating child patients, the aesthetics of my skin condition did not faze me. I would attend work with sores on the inner sides of my elbows, a bright red and irritated neck and a very flushed face. When I look back at pictures of this time, I giggle to myself that I still took the time to draw on perfect eyebrows with make-up.

I made my first trip to the GP regarding my skin since my childhood years. Being an atopic person [someone who is sensitive to allergens], you get used to rashes, hay fever, the occasional need for a pump on a salbutamol inhaler - but in 2018 I could tell that my skin was progressing into something unknown to me and my body. Up until this point, I had hydrocortisone 1% ointment on a repeat prescription for years, alongside a range of emollients and moisturising creams. The steroid cream I was using was always part of a routine, but even this was not settling my skin condition. A photo sent to dermatology of my puffy, swollen and bright red face, was replied to with a prescription for Eumovate, a stronger steroid cream. This medication is classed as a ‘moderate-potency corticosteroid'; in comparison, hydrocortisone is classed as mild. I was to apply this new steroid medication to my face, the area of ‘eczema' that was very stubborn. Now please do not get me wrong, this cream worked. I used to call it my Magic Cream and, in all honesty, I think when I was using this, it was the best I ever looked. Plump, beautiful skin which I could wear make-up over. I was on top of the world, helped by the fact that I had just accepted a place at university to undertake my clinical education Master's degree, and had secured a teaching job at a dental school. My goals were in sight, and on top of this, I got to move down to the south coast of Devon.

figure 2

September 2022: the most recent and aggressive TSW flare up, almost four years following withdrawal

Happily settled in Devon, I started an Instagram page, my username drawing on the alliteration of Emily and eczema. I posted pictures of my face, before the steroid cream applications and then after a few days of their magic healing capabilities. It was becoming apparent that my flare ups were more and more regular, normally kicking in just a few days after stopping the creams. Back to the GP and a prescription of Protopic was given. Protopic is an immunomodulator and comes with a black box warning for risks of skin cancers. When I put it on my skin, an intense burn occurred, but I was told this was normal. Something switched in my head, and I was suddenly very aware that all these medications seemed to be making my skin, and quality of life worse (boy, was I unaware of what was in store for me). An Instagram message pinged up on my phone while I was in the back seat of a car on the way to a concert with my friends. ‘I have something to share with you regarding your skin… You are right to think that your medications may be making you worse… Do you have a support system around you?... Please read this paper to see if anything resonates with your current symptoms…' I laughed at all this dramatic wording. ‘This woman doesn't know me!' I thought. But blimey, did she know what I was going through. I read the paper.

The skin is your largest organ, and it made sense that everything I had been plastering on it for the past 20 years had had a systemic effect.

Topical Steroid Addiction: Prolonged use of topical or oral steroids, tick. A bright red rash from the neck up with unaffected areas of the chin and nose, tick. Intense, bone-deep itching and pain, tick. Problems in thermoregulation, tick. Oozing of fluid from grossly broken skin areas, tick. Case study images, confirmation this was what I was going through. This presentation was also referred to as Red Burning Skin Syndrome in this original research, but this term has now been abandoned as this was only the presentation in Caucasian skin types.

figure 3

Signs of Topical Steroid Addiction

I stopped my steroids and Protopic the day after reading the paper. I put myself into the phase of Topical Steroid Withdrawal (TSW), the condition many of my internet allies had also been going through. A week later, the long-awaited withdrawal process started. I am, and still am so grateful for the support I have had from my online community. Many people with the same symptoms reached out with reassurance. The skin is your largest organ, and it made sense that everything I had been plastering on it for the past 20 years had had a systemic effect. I went through physical manifestations I would expect a drug addict who was in withdrawal would go through: shivers, searing back pain round my kidneys, insomnia, and a crippling deterioration in my mental health. I was so very lucky that I lived with my best friend, who took on the role of my carer and cheerleader, providing emotional support without batting an eyelid. For this, I owe her the world.

One of the hardest things was going through a condition which wasn't nationally recognised. Thankfully in 2021, the Medicines and Healthcare products Regulatory Agency released a drug update outlining the risks of topical steroid medication.1 This validation from the medical community is a small step to feeling supported in the lonely world of chronic illness.

Being a dental professional and an educator is embedded within me. It would have felt like a loss if I had had to give this up, even temporarily, so I worked and studied throughout my withdrawal. Masks irritate my open wounds, aerosol-generating procedure (AGP) masks cut into my painful skin and the discomfort is often unbearable, so I try to keep my operating periods short and sweet. Trying to focus when in searing pain is a difficult task to manage. In my old job, working with students had me self-conscious. There were 80 in a skills lab and there wasn't any opportunity to hide my severely affected face. I got on with it, and as I got to know the cohort through their training, I eased into embracing my skin condition as a minimal disruption to my educating duties to them. Only once did I have a concerned student look up at me and say, ‘Are you okay? Have you had an allergic reaction?' I smiled, thanked her for her concern and felt comforted that her medical emergency training on anaphylaxis had been effective.

figure 4

2019 (left) and 2020: One year's difference; skin can have long periods of health and relief

Moving into new dental practices with a skin condition was something I was not worried about, but an encounter on my first day at the fancy implant practice by the seaside obliterated my confidence. ‘This is Emily our new hygienist, don't mind her skin, she's had an allergic reaction to a cat.' I stared blankly, hurt, and betrayed by this dentist I had met not an hour ago and explained my skin condition to. He felt the need to make an excuse on my behalf, his motive behind this I will never understand. It was at this moment that I realised not everyone will accept you on a level below the physical.

I have put a lot of work into my attitude towards the world outside of my own bubble. Solid effort has gone into maintaining and rebuilding my own wellbeing. Becoming resilient to negativity and self-doubt has been a long but beneficial venture. A year ago, my mental health was at such a devastating low that I needed professional intervention. I turned to help from friends, family, and my GP, who referred me to mental health services, and I am pleased to say that, with this help I am seeing improvements. I encourage anyone who is going through a chronic illness to seek mental health aid at first sign of deterioration. One of my only regrets is that I waited too long for this intervention.

Solid effort has gone into maintaining and rebuilding my own wellbeing. Becoming resilient to negativity and self-doubt has been a long but beneficial venture.

I lost myself to Topical Steroid Withdrawal and the subsequent depression that followed it. The girl that I was, just years ago, with the brightly coloured hair and reverberating goose-like laugh was in the past, and all hope of her returning in my future seemed unlikely. Slowly, my identity felt within reach again, and I believe my role as a dental therapist and an educator solidified this. We always say, ‘time is the best healer', but we must ensure we are in the correct environment for this healing to happen. I am now working in a dental school where colleagues ask me to their office for a coffee and catch up about my skin, supportive management that make sure I am well enough to be in work, and amazing students that show empathy every day and pull me to the side to show me TikToks about the latest skin relief tips they have seen. I am so grateful that this is my current environment for healing.

I am not ashamed of my skin or mental health disorders. I show myself acceptance and compassion, like I would to anyone else that was going through this. Working in a healthcare setting, I am surrounded by compassionate people, who thankfully don't flinch at the sight of blood and scabs. I hope that the future brings personal improvement in my conditions, but also more support for anyone going through similar issues. I am thankful to have been asked to write this piece and increase awareness for Topical Steroid Withdrawal, and hopefully remind any readers that they are deserving of self-love and healing. That's what is getting me through.

For further information and support on Topical Steroid Withdrawal, visit https://www.itsan.org/ or https://scratchthat.org.uk/.

For further information and support on mental health, visit https://www.mind.org.uk/ or reach out to Samaritans on 116 123.