Practice A Patient’s Journey

Adult atopic eczema

BMJ 2011; 342 doi: https://doi.org/10.1136/bmj.d644 (Published 14 March 2011) Cite this as: BMJ 2011;342:d644
  1. John Fuller, patient1,
  2. Andrew Wright, consultant dermatologist2
  1. 1Shipley
  2. 2St Luke’s Hospital, Bradford BD5 0NA
  1. Correspondence to: J Fuller somersettalk{at}yahoo.co.uk
  • Accepted 19 October 2010

In the 13 years since his eczema returned, John has tried the full panoply of treatments and been admitted to hospital many times; he recognises that his is an exceptional case

Just after I graduated from university, my eczema returned. I had been hospitalised with the skin condition as a child, and it had disappeared suddenly before my teens. When it came back, I immediately recognised the telltale sign of an unbearable itch, which initially limited itself to the crooks of my elbows and the backs of my knees.

My general practitioner’s treatment regimen of emollients and an ever increasing strength of topical steroids failed as the eczema spread all over my body. My overwhelming early feelings were of anger, helplessness, and dread. I felt the eczema wasn’t being treated aggressively enough but knew there was no magic cure and that I might have to live with it for the rest of my life.

I was diagnosed with severe atopic eczema, and my health quickly worsened through a combination of habitual scratching and a barrage of infections that exacerbated the condition. I thought nothing of ripping at my skin continually until the blood was flowing and I was exhausted and in too much pain to continue. My skin was forever dry, inflamed, and covered in open wounds.

I endured a broad range of symptoms in that first year of my relapse, learning all the spiteful ways that atopic eczema can manifest itself. Weeping eczema ruined bedding, stuck to clothes, and was a cloying, unpleasant reminder. Yellow crusting meant infected eczema, which required antibiotics. Inflamed hair follicles caused white, painful spots all over my legs. Meanwhile, I derived a perverse pleasure from picking and scratching at wounds that hadn’t healed.

Admitted to hospital

I finally saw a dermatologist who fast tracked my admission to Chelsea and Westminster Hospital. It was both a relief to be well cared for and a worry that things had got so out of hand. I remember feeling ashamed that I hadn’t been able to cope at home. Looking back, I should have been referred to secondary care much sooner—not because I somehow deserved better care but because I obviously needed specialist treatment a GP couldn’t deliver. The common misconception is that adults with eczema are able to magically cope better just because they are adults.

Alongside all the physical symptoms were the psychological pressures. I felt frustrated, powerless, and embarrassed about the way I looked, and enormously guilty. Eczema is, to my mind at least, like a form of self harm, and to that end I felt responsible for what was happening to me, and still do. Obviously I can rationalise that having eczema is not my fault, but ultimately the root of the problem is the damage done when I tear at my skin on a daily basis.

It was like having a split personality. When the eczema was subdued I could be outgoing, confident, and sociable; the other side of me felt awkward, was ashamed to be seen in public, and would default to his insular world. Staying in meant not being judged, a safety net of sorts; something that continues even today.

I started the immunomodulator, ciclosporin, after that initial spell in hospital, which stabilised my health and gave me a glimpse of how I could manage my eczema, without it controlling me. Over the next 18 months, my dose of ciclosporin was first increased to the maximum safe level for my body weight to keep the eczema at bay—but when blood tests flagged up potential problems, it had to be gradually lowered, then stopped after it became ineffective.

Since the age of 21, I have been taking ciclosporin, azathioprine, or a combination of oral tacrolimus and mycophenolate at one time or another. All share one characteristic: my body adapts to them and the eczema becomes uncontrollable. In those 12 years, I have been admitted to hospital many times and the number of consultants I’ve seen stretches into double figures. I’m an extreme case—a fact I often need to remind myself of after a torrid scratch and the usual soul searching.

Along with my systemic medication, the side effects of which included severe nausea, shakes, extreme tiredness, and being prone to dizzy spells, I have been prescribed short courses of oral prednisolone. This has always been successful as a short term fix—but the impact of rebound eczema often makes me regret taking it. A week of respite will always precede a horrendous flare, but to see my skin clear, even for a short time, can be a real boost.

Coping

Coping with eczema, as I’ve learnt over the years, extends far beyond taking steroids, immunosuppressants, antibiotics, and antihistamines. Eczema interferes with every aspect of life. Tackling people’s perceptions and lack of knowledge in the wider world about eczema was a serious shock. I was once warned not to take any more time off work or I would be fired, a week after coming out of hospital. There is no quick fix for eczema, and for some people, whose only reference point may be mild eczema, the severity of my condition is hard to understand.

The unpredictable nature of the condition has made forging a successful career really difficult at times. Taking time off work can be awkward enough, but having no control over the situation and finding a suitably understanding employer has been hit and miss. Additional stresses include an impossible desire to keep my condition secret from a new employer so as not to stand out as troublesome; explaining eczema to new colleagues all over again; applying creams effectively at work; and balancing the drowsy effects of hydroxyzine with being able to do a full day’s work.

Needless to say, through all of this a support network is invaluable, and trusting someone with all your worst problems concerning eczema is a vital crutch on which to lean. I often have the same conversation with my father about my skin: he says that he knows how attritional and difficult it can be for me and he wishes he could do something—this in itself is therapeutic.

I am lucky enough to have a wife who accepts me, incessant scratching and all. She is not judgmental, nor does she get angry at me for repeatedly doing such terrible damage to my skin. To be built back up again when at the absolute lowest point is something I’ve had to rely on a number of times, and it’s both a stark warning about how debilitating eczema can get and humbling to have someone there to help and understand. What shouldn’t be underplayed is the impact on those who live with someone with eczema. Everything from the lack of sleep to the emotional stress of seeing someone continually hurt themselves has not been lost on me.

Where am I now?

I was in hospital in 2010 with the worst eczema of my life. I’ve switched to taking methotrexate, which has had some early success with my skin, but the future is a worry. Without that core stability of a successful treatment, I flare constantly and am easily infected. I think I have a reasonable outlook: I have squared that I might live with this forever but want a semblance of control to enable me to lead a normal life.

I am 34 and already scarred from years of scratching. I’ve taken more oral steroids, antibiotics, and immunomodulators in the past year than ever before and am realistic enough to know there might be consequences when I’m older—but what are my options? I’ve always taken the approach that if my eczema gets out of hand then we’ll try something else. By now, though, I’m not sure there really is anything else, which remains something of a worry. But new treatments do come along, and I’ll be the first in line when they do.

What has worked well and what has not

What has worked well for me
  • Being given the time to talk through issues properly with nurses, GPs, and dermatologists. Dealing with eczema is complicated and being spared the time to answer questions really does matter—that dermatology appointment may have been months coming and something to look forward to. Failing that, access by email is a helpful stopgap between appointments

  • Identifying the start of a flare and acting quickly—an ice pack and distraction (usually television or a computer game) can sometimes stop a flare before I’ve had time to do any serious damage

  • Reminding myself that it’s not my fault. Owing to the nature of eczema, a lot of guilt is wrapped up with it

  • Identifying lifestyle changes and triggers that can make a difference. I no longer drink alcohol because it quickly makes me hot, red, and itchy. My skin reacts dreadfully in the sun so I am careful to keep covered up and choose a sensitive cream with the highest protection factor. Rain often irritates my skin, and the herpes simplex virus via a cold sore is dangerous for my eczema and needs treating quickly

  • Eczema support groups were not something I readily considered; I felt like I wanted to tackle eczema myself and would never open up to strangers. However, I learnt tips that hadn’t occurred to me before, and I was able to pass on knowledge that I’ve acquired over the years

  • The National Eczema Society is a charity offering a huge amount of information about every type of eczema. The ability to tap into accurate medical and lifestyle information has been really useful over the years

What has not worked well
  • Dermatologists who pushed me towards their favourite treatment—I was once pressured into ultraviolet light treatment despite protesting that I was very sensitive to the sun. The result set me back several months, and I needed time off work

  • When my skin deteriorates beyond a certain point, I might need help all of a sudden. Often getting appointments or access to the right help urgently, given the demands on dermatology departments, is not quick enough

A doctor’s perspective

The prevalence of atopy in the population may be as high as 20% and rising. Up to half of people with atopy will develop atopic eczema at some stage.

The commonest form is in childhood, but the condition can persist into adult life. A prevalence study in the United Kingdom found 38% of cases were in people aged over 16. In a small group of people with childhood eczema the problem recurs in adulthood. For some people this can become a chronic and difficult management problem. John’s story is typical of that told by adults with chronic atopic eczema. As the condition is less common in adults, it may not be recognised at an early stage in the disease process, and the intensive treatment that is often needed to bring the condition under control may not be instituted or organised. Lack of public awareness of skin diseases in general, and particularly of severe eczema, often exacerbates the problem by causing embarrassment and therefore increasing psychological pressures.

John’s story is an example of how difficult it can be to treat adult atopic eczema. A regimen using ointments and creams is not easy to follow with a heavy work schedule and is often not compatible with wearing the type of clothing expected in some work environments. Many adults with eczema experience difficulties in personal relationships and employment, adding to their stresses.

Adult atopic eczema can respond poorly to treatment. John has worked through a variety of standard recognised treatments without huge benefit, including oral and topical steroids, emollients, ultraviolet light, and ciclosporin and other immunomodulators, and he is currently reasonably controlled by taking methotrexate. Given the treatments he has had, the range of further options is limited, and both he and I are keenly watching the literature for developments in the treatment of this condition.

The treatment of other chronic skin conditions has advanced recently, particularly the introduction of biological agents to treat psoriasis, and it is to be hoped—on behalf of all of those with atopic eczema but particularly those adults with chronic problems—that similar exciting developments are on the horizon for their condition.

Andrew Wright

Notes

Cite this as: BMJ 2011;342:d644

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

  • Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years, no other relationships or activities that could appear to have influenced the submitted work.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

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