Retired GP and former chair of the Dermatology Council for England Dr George Moncrieff considers how to help a patient with a severe eczema flare that seems to worsen with topical steroids
The conundrum
You see a 28-year-old woman with a long history of atopic eczema who presents with a very severe flare affecting much of her body, but especially her face and genital areas. This came on abruptly over a few days, a fortnight ago.
Her skin is generally red, weeping, painful and intolerably itchy. She can barely tolerate water on her skin, let alone emollients and topical steroids. She feels quite unwell in herself.
She has been using a potent topical steroid (TCS) on her body and a moderately potent topical steroid on her face, but she says: ‘I think my topical steroids are driving this, as every time I apply them, it becomes massively worse over the next 24 hours. I really need those steroid tablets I had before.’
You look back in her notes and see that she was treated with oral prednisolone a few years ago, although it looks like she had repeated relapses and needed multiple courses for about six months.
What might trigger a worsening of this sort?
This presentation is typical for a condition that is seriously under-recognised, called Topical Steroid Withdrawal (TSW). TSW is different from under-controlled severe eczema. A clear pattern rapidly emerges of TCS aggravating the condition.
The term TSW can be confusing, and the condition has had various names over the years (including steroid dermatitis); however, this is the currently used name. The consistent feature is that it is driven and made worse by TCS, but sometimes first appears on TCS withdrawal. What is clear is that continuing TCS only makes matters worse.
The patient usually has a past history of eczema, often with occasional severe flares which have previously responded normally to stepping up treatment with TCS. However, for reasons that are not clear, TCS suddenly start to make things worse. TSW is more likely after prolonged use of potent TCS (months or years), but can happen even after a short course of a mild TCS. TSW can occur in both sexes and at all ages but appears to be most common in young women.
TSW can cause extreme and often generalised redness of the skin, with unbearable itch (worse than that normally experienced in severe eczema), pain and often disfiguring swelling. It typically extends beyond the areas of skin that have been treated, having a predilection for delicate areas such as the face and the genitalia.
There is a dearth of research into this condition. A recent paper demonstrated a pattern of abnormal mitochondrial activity in the skin of patients affected by TSW compared to those with severe eczema, supporting the view that TSW is a specific entity. This may suggest some therapeutic avenues in future.
There are a few potential differential diagnoses to consider:
- A contact allergic reaction to the TCS or an ingredient (eg, preservative). This has been well-described and is not uncommon. If suspected, arrange urgent patch testing in secondary care while topical treatments are switched.
- A flare of very severe uncontrolled atopic eczema, for which even potent TCS may not be adequate. Triggers for a severe flare of atopic eczema include infection (eg, herpes simplex), stress, use of detergents and weather changes. Once eczema flares, an itch-scratch-itch vicious cycle can rapidly develop, perpetuating and aggravating matters.
- Ineffective use of topical steroids, or out of date topical steroids. It is not unusual to discover that a patient is so concerned about potential side-effects from their TCS, that they use inadequate amounts. This can be the result of well-meaning but ill-informed advice. However, this possibility does not sound remotely likely here, as the patient says her TCS are making matters worse within 24 hours of application.
It is always a good idea to review the diagnosis when effective treatments are not working according to plan. Could a fungal infection be playing a part in making matters worse? The facial element of her rash could be periorificial dermatitis, which is invariably associated with exposure to TCS. In this condition, whilst TCS typically help initially, they also drive rapid deterioration. However, that wouldn’t explain her more widespread, generally red, inflamed skin and the genital involvement.
With severe, red and weeping skin (verging on erythroderma) would you consider admission – when and why? If she does not need acute admission, how quickly should she be seen by a dermatologist?
It sounds as if the patient is verging on erythroderma and so admission should be considered. However, she is a young woman, so is likely to be resilient enough to cope with the physical stress of skin failure/erythroderma and admission is less likely to be necessary than for an older person. Careful objective assessment of her general condition, and her ability to cope with her skin care, the pain and the itch, is essential.
This decision about admission is usually negotiated with the patient, taking into account their past experiences and the support they have at home as well as the objective severity of their condition. It is rarely a black and white decision.
A POEM questionnaire would provide a useful measure of the severity of the impact this is having on her. An EASI score would give an objective measure of severity but is not regularly done in primary care. Both assessments would provide useful information for severe eczema and TSW. It is also important to establish how much support she has at home. This information puts the clinician in a good position to discuss her immediate management.
If TSW syndrome is suspected, coming off any TCS as fast as possible is essential. However, they may need to be tapered off over a few days or even a couple of weeks. Longer term, TCS are unlikely ever to be tolerated again. Consequently, the management options, particularly in primary care, are severely limited.
If the patient is not admitted, they require urgent referral to secondary care. I would consider calling the dermatology department with the aim of securing an out-patient appointment within a week or two.
Many patients with TSW require second-line treatments (such as cyclosporin, methotrexate, or azathioprine), though we do now also have highly effective JAK inhibitors and biological treatments, which might help.
Should the GP start oral steroids in this situation? What should the regime be and how can the problem of relapse after treatment be avoided?
It is important to establish the patient’s ideas, concerns and expectations and it is helpful that she has already said she thinks she needs a course of oral steroids.
A course of oral steroids is occasionally recommended to control very severe, acute eczema.They can help to settle a flare, while reviewing lifestyle, stepping up emollients, managing triggers (such as infection) and stepping up topical therapies. In the case of a severe eczema flare, provided there were no major contra-indications (such as uncontrolled diabetes, recent live immunisation or active infections), I would consider a short course of oral prednisolone (30mg a day for up to 2 weeks, gradually tapering off, including alternate day dosing, over a further fortnight). I have, however, only resorted to prescribing oral steroids for acute severe eczema a handful of times in my 40 years of practice.
The prospect of repeated courses of oral steroids to control further relapses is a significant risk. Oral steroids have potentially serious longer-term side-effects, including osteoporosis. The patient will need a blue ‘steroid card’ to read and carry, as this course will cause some immune suppression for a few months.
Paradoxically, while topical steroids drive TSW, some patients may find a short course of oral steroids helpful in the very short term. The concern is that these simply postpone the inevitable and do not switch the inflammation off permanently. The use of oral steroids for TSW is not established. If TSW is the diagnosis, I’d be very reluctant to recommend them here.
How should we help a patient whom we suspect is suffering from TSW?
I would review her skin care regimen in detail, starting with how she normally washes (eg, does she bathe or shower and how often?). She may be able to tolerate a tepid bath with Dead Sea salts, or with an anti-itch oil, such as Balneum Plus Bath Oil, which can be very soothing. Does she normally use any detergents to wash? Does she wash her hair with shampoo and allow that to rinse over her skin? In my experience, eczema or this sort of severely inflamed skin will never settle unless all detergents on the skin are completely avoided. I would note which emollients and other treatments (including TCS) she had been using, how much and how often.
Many patients with TSW are unable to tolerate even plain water on their skin (as is the case here), so applying emollients would probably be impossible. However, if she could tolerate a very light emollient lotion gently stroked onto the skin, that would be ideal. Ideally, I would recommend a sophisticated emollient containing active ingredients such as ceramides or nicotinamide. (Unfortunately, many of those are not available on NHS prescription).
When the skin is acutely inflamed, as in this condition, it feels like a burn; it weeps and can start to shed dramatically (some patients have described that as ‘snow storming’). The patient needs pain relief for the extreme burning pain and itch that comes with this condition, just as for a patient with severe burns.
She may need help to manage her skin, so I would involve our practice and district nursing teams to advise and help with dressings. Attention to temperature control, fluid intake and blood pressure may be necessary, as for anyone with a severe burns or scalds, or erythroderma.
Keeping the skin cool (whilst maintaining the ambient room temperature) can help to soothe the pain. Organic, seamless cotton clothing could help, or better still silk pyjamas.
Oral antihistamines have little effect on the itch in eczema or TSW, as histamine doesn’t mediate the itch. Old-fashioned sedating antihistamines cause drowsiness, and that might help sleep, but they do have a long half-life, and that drowsiness can persist for over 24 hours.
This patient is suffering, and I am concerned I may not be able to help her much in the short term. She will probably need to be signed off work for a few weeks.
I would want to ensure she has clear written instructions regarding my recommendations and clearly understands when, how and who she should contact if her condition deteriorates.
When dealing with TSW, it is important from the outset to share realistic expectations. This is a miserable condition that is seriously under-recognised by the profession, which is little understood, and with no clear guidance of management. Recognition, empathy and understanding are essential to develop an effective working relationship, as this condition can remain severe and very unpleasant for many weeks or months.
It is essential to develop a constructive relationship, based on honesty, kindness and respect. A follow-up phone consultation the following day is critical to review her condition. It would also provide an opportunity to re-visit all the information that was covered at her initial presentation.
Finally, I’d signpost her to useful resources, such as the National Eczema Society, helpful social media sites where she may find support, as well as the International Topical Steroid Awareness Network (ITSAN)and Scratch That U.K.
Dr George Moncrieff is a retired GP from Oxfordshire, and former chair of the Dermatology Council for England
Note cases included in this series are hypothetical scenarios developed for illustrative purposes
