National Eczema Society member, Sarah Celestine (aged 49), the first person in the UK to gain compassionate use of dupilumab, shares her life-changing experience of the new biologic drug.
“I didn’t want to write about my experiences with eczema, until I had something positive to say.”
I saw my first dermatologist at age 2 with severe atopic eczema, and developed asthma and severe allergies by the age of 4. At 5 years old my IgE1 was highly elevated at 3,000 and I was showing a severe allergic reaction to everything I was tested for, including house dust mite, dogs, cats, horses, feathers, wheat, dairy, eggs, and grass and tree pollen. I later discovered I was also allergic to fish, nuts, mould, latex, and sodium lauryl sulphate (SLS), an ingredient in prescribed emollients for over 20 years.
The severity and frequency of allergic flare-ups generally worsened as I got older. The only available treatments were excessive amounts of prescribed topical and inhaled oral steroids, and a lot of antibiotics (the wonder drugs of that era). This cocktail of treatments caused a myriad of serious and life-threatening side effects, and increased my physical and mental incapacity.
I was first admitted to hospital when I was 5 years old, in a desperate attempt to get my skin clear before I started school. It was traumatic, away from my parents, wrapped head to toe in padded bandages. I was kept in isolation and from this age I got used to being alone.
Throughout my life I had many more admissions, in isolation, which meant that I was absent from school most of the time without any educational, community or social support for me or my parents. The school couldn’t accommodate my medical needs and wouldn’t administer my medications. The uniform was made of nylon and wool, with a skirt that exposed my sore legs.
My mum struggled to find comfortable clothes for me and I believe it was around this time that we became members of NES, as we were trying to find cotton clothes suppliers. We held jumble sales and sold Christmas cards and raffle tickets to raise money.
In adulthood, I was able to manage part-time study and work; however, the eczema would often be too severe and persistent for me to continue. Allergic relapses were treated with the oral steroid prednisolone, propelling me into mania, hyperactivity and risky behaviour as I searched for alternative treatments. But then as I reduced the prednisolone, my pain increased and my depression deepened. I became trapped in a chronic cycle of suffering.
I have had boyfriends and been married; however I prefer to be single when I’m unwell. I didn’t feel confident to have children – I was afraid they might inherit this condition and it would be impossible for me to care for them. However, then I had no choice when I was diagnosed with premature ovarian failure.
It became a perpetually exhausting and disappointing cycle of working hard at gaining some kind of normal life, just to lose it, time and again. Lacking confidence in the medical services, my parents and I have explored many alternative medicines and paid for private treatment in the UK and abroad. Looking for the next miracle cure or extreme exclusionary diet gave me temporary, but blind faith that one day I’d find the cause and/or cure for my condition.
However, this hope was shattered by my most recent sustained flare-up, which started about 10 years ago. I became unresponsive to even the most potent topical steroids and the eczema flared uncontrollably and relentlessly.
My whole body was severely affected (erythroderma) and it was too painful to move or to be exposed to the air. My ankles, feet and legs swelled up and I couldn’t stand, walk or use my hands. My extremities turned blue and I couldn’t control my body temperature. I found myself disabled, bed-bound, with ulcerated legs (gravitational eczema) and battling infections for many months, whilst I waited to see my dermatologist. I became dependent on diazepam and zopiclone to sleep and would wake up wondering how I might kill myself, rather than face another day in my painful body.
Hence, I accepted the immunosuppressant medication cyclosporine, which I was prescribed continuously for 9 years. It caused frequent severe infections, high cholesterol, hypertension, and stage 3 kidney damage, and put me at high risk of cancer. When the cyclosporine didn’t control the eczema, I requested hospital admission, but this was denied. Instead I was given prednisolone (in addition to cyclosporine), which I ended up taking continuously for 6 years. This caused premature ovarian failure, osteopenia, bipolar disorder and adrenal insufficiency. I also had severely involuted toenails that were continuously infected. By this time I had 41 items on repeat prescriptions.
I was trying to live independently, but in reality I was failing to even keep myself alive. I really didn’t want to carry on, what with chronic sleep deprivation, insomnia, major depression and antagonising anxiety. The effects accumulated and when I was taking 40 mg per day prednisolone, it would make me spontaneously aggressive and involuntarily self-harm. My suicidal feelings intensified. I knew I couldn’t stop this behaviour until I reduced the prednisolone, but doing that would slump me into a depression. I was totally unaware of the possibility of another side effect of prednisolone – adrenal insufficiency, causing severe fatigue, nausea, muscle weakness, anxiety and depression – which if untreated quickly leads to death!
Thus, I was totally physically and mentally incapacitated and had to move back with my parents who are in their 70s. I was completely reliant on them to provide the personal care and support I needed. For many years, my mum drove me to medical appointments three times a week, and washed bandages and bedding every day. My dad shopped, cooked and managed all practical matters. I employed a cleaner to help vacuum up all my dead skin, scabs and allergens. Help from community/social services was frustratingly inaccessible and just produced piles of paperwork.
Meanwhile I relapsed time and again; up and down on prednisolone, I’d swing from spontaneous rage to absence seizures. Eventually, after another critical A & E admission in 2013, I was weaned off prednisolone and diagnosed with adrenal insufficiency (steroid dependent) in 2015.
I’ve often sought various mental health therapies; however, the 20+ GP referrals to various mental health departments just led to a long chain of assessment and re-referrals. Finally, I had a physical health psychologist who refused to visit me at home and more or less said:
‘You’ve had this condition all your life, get used to it!’
In fact – since infancy – I had become far too used to the chronic pain and psychological impact of eczema, as well as all too familiar with the damaging effects of long-term treatments. I had read about the effects of inflammation on the brain and I asked for dermatology, respiratory and psychiatry to communicate with each other. The response to my complaints was an NHS advocate advising me to make an advanced directive for when I was mentally incapable of making decisions. My GP signed it and this motivated me further, to seek euthanasia as the only escape!
We had all obviously given up hope; however, then I heard about clinical trials and we started investigating and I asked for a referral to clinical research. Unfortunately, I didn’t meet the entry criteria for the dupilumab trials, but thanks to the dedication of the multi-disciplinary team, just after my birthday in December 2016 I became the first person in the UK to gain early access to dupilumab on compassionate grounds.
Within a week I was significantly less itchy. For the first time I could sleep, and my mental health began to improve. After a lot of dead skin shedding, the skin underneath was increasingly normal. My hair grew back, my ingrowing toe nails are now nearly normal and I get far fewer infections. My kidneys are back to normal range. I can stand, walk, use my hands and move around without pain. I haven’t needed any prednisolone, and my hydrocortisone therapy is much more balanced. My total IgE measurement has dropped from 14,000 to 3,300 and my allergic reactions have been greatly reduced.
My daily meds have now reduced, though I still use emollients and Protopic (tacrolimus) on my face. The only issue I’ve had with injecting dupilumab is an increase in facial flares and conjunctivitis, which became quite severe. This has caused some people to come off dupilumab, but for me it’s a comparatively small discomfort. My everyday quality of life has dramatically improved and my parents are relieved to see me living again. We have been able to go on holiday and I can go out in the garden. I can make plans for the future and look ahead.
This and other new medicines that are coming forward are totally changing the way eczema is being diagnosed and treated. In addition, a multi-disciplinary approach that brings together expertise in dermatology, psycho-dermatology and immunology is enormously helpful (in my case, the respiratory, ophthalmology and endocrinology departments have been involved as well).
This has greatly improved my physical and mental health in the last 2 years and reduced my medical appointments to one every 3 months. In the last year I have been given the opportunity to share my experience of dupilumab with the National Institute for Care and Health Excellence (NICE) and the Scottish Medicine Consortium (SMC) medicine assessment processes, which have recently approved the use of dupilumab by the NHS for people with severe eczema, under certain criteria, which we hope will expand.
I was also invited to talk at the European Association of Dermatologists and the annual conference of the British Association of Dermatologists, particularly to highlight the psychological aspects of eczema and the need for a holistic multi-disciplinary approach to improve the efficiency and effectiveness of treatments, improve outcomes, and in the long-run save lives and resources.
I could not previously bring myself to write or talk about my experiences with eczema. I had nothing positive to say and we were always very dissatisfied with care and treatments. In 3 years, the multi-disciplinary team saved me from suicidal suffering and supported me to become a patient speaker and assist in the retraining of dermatologists, incorporating the new holistic approaches in their practices.
I didn’t think I’d make it and I really didn’t want to, but now I’m happy to be alive and envisaging a future, beyond my 50th birthday! Thank you, to my parents, NES, clinical research team and multidisciplinary team, and many others who have made this happen.