National Eczema Society is aware of the concerns some people have about the side effects of using topical steroids and growing interest in topical steroid withdrawal (TSW). Here we have provided answers to some of the questions our charity is often asked about topical steroid treatment and TSW. This is a complex and developing area, with limited research at the moment. National Eczema Society wants to see more research into TSW, so we can better support patients and healthcare professionals.

What are topical steroids (TS)?

Topical is a medical term that means ‘applied directly to the skin’. Steroids are natural hormones produced in the body, which can also be made synthetically as medicines. There are two sorts of steroid: corticosteroids that reduce inflammation, and anabolic steroids that increase muscle mass. Topical Steroids (TS) contain corticosteroids and used to treat many different inflammatory skin conditions including eczema. In the UK, TS are available in four different strengths, called mild, moderate, potent and very potent.

Some people can control their eczema by careful skin care, using emollients and avoiding irritants and other things that can trigger eczema. If the eczema flares up despite these measures, NHS guidance recommends TS as the next step in treatment. TS are prescribed by healthcare professionals, although milder forms – such as hydrocortisone – can be purchased from pharmacies. TS are used to treat or prevent flare-ups, but are not a cure for eczema. For more information about TS, see our webpage here.

Are topical steroids safe?

TS can be a safe and effective treatment for eczema but, like any drug, they must be used as advised by your healthcare professional to avoid adverse effects. Information about side effects is included in the leaflet enclosed with every pack.

TS must not be used on infected skin unless it is combined with an antibiotic. When used on the face, they may cause pimples or other rashes, and medical supervision is needed if they are to be used around the eyes. Occasionally people become allergic to the cream. Using large amounts of TS can thin the skin and the steroid may be absorbed into the bloodstream. Babies and children can be treated with TS, but their delicate skin is more likely to absorb steroid and therefore only milder TS should be used. If enough TS is absorbed, it acts like a steroid medicine taken orally as a tablet or by injection: it can suppress the body’s natural production of corticosteroid causing health problems. Prolonged use of strong TS can result in TSW (see below). These adverse effects are rare if the strength and quantity of TS are kept to a minimum and are carefully chosen to match the person’s age, severity of eczema and body area.

With all medicines, we have to balance the benefits against the risks. Millions of people have used topical steroids safely over the past 70 years, and the long experience we now have with TS shows that the benefits of correct use vastly outweigh the risks. There are also many research studies into the use of TS and the latest evidence on safety of TS has been reviewed recently.

What is topical steroid withdrawal (TSW)?

After stopping TS other problems may develop. Often the original condition comes back when the treatment stops – eczema is a long-term skin condition that comes and goes and this is a normal pattern. There is also a group of symptoms called topical steroid withdrawal (TSW) reactions, referred to by patients as ‘topical steroid withdrawal’, ‘topical steroid withdrawal syndrome’, ‘red skin syndrome’ or ‘topical steroid addiction’. These are severe reactions that can occur when moderate- or high-potency topical steroids are stopped after prolonged use, usually more than a year and usually to treat eczema. Patients experience symptoms worse than their original condition. They suffer red or darker burning skin (darker than their usual skin tone, depending on skin colour) often in areas where they never had eczema before. They can feel tired and weak and may even be bed-bound. Dermatologists would call this erythroderma or erythrodermic eczema. It appears that the eczema has bounced back worse than before, perhaps because the skin has been altered in some way by the topical steroid. The condition can continue for months or years. Prolonged use of potent and very potent TS may even suppress the body’s own normal steroid production. This is called hypoadrenalism and causes severe weakness and low blood pressure.

If you experience a side effect(s) after using TS, we encourage you to report it to the Medicines & Healthcare products Regulatory Agency (MHRA)’s Yellow Card scheme.

How can TSW be prevented and treated?

Reflecting the evidence, we believe that TSW is caused by prolonged use of strong TS. If eczema remains severe despite strong topical steroids and always comes back within a week if the TS is reduced or stopped, then a patient needs hospital assessment. It can be dangerous to stop the TS suddenly and risk TSW. Investigations are needed to find out why the eczema is not responding to the TS and to check for hypoadrenalism. Other therapies will likely be considered such as immunosuppressant tablets and the newer biologic medicines (see below under alternative treatments) and TS can be stopped safely with medical support. Dermatologists are here to help and wouldn’t want anyone going through the difficulties of TSW alone. If the patient has already stopped the TS and is going through TSW, immunosuppressant therapies can be very helpful.

Are topical steroids addictive?

Steroids do not act on the brain to cause the same sort of craving as alcohol or drugs of addiction, but they can cause dependence. TS are very effective anti-inflammatory agents, so if they help, even just a bit, patients may feel a need to continue in order to stop the condition coming back. In most cases this is fine, and sooner or later the condition stops coming back and the need for TS stops too. This is no more addictive than needing paracetamol for a sprain. If the eczema inflammation does not clear up despite using high quantities of strong topical steroid, stopping can cause the eczema to flare up badly or TSW could result.

How would I know if either my child or I has TSW?

Most people who use TS do not experience these problems and some people may worry unnecessarily. If you use a mild or moderately potent TS intermittently on limited areas of the body, TSW is most unlikely. Ideally, you would use TS for no longer than 14 days and then take a steroid break for two weeks or longer. The natural course of eczema is that it comes and goes over months or longer, and TS are used to treat flare ups if they do happen. Therefore, if the eczema comes back some weeks after you stop using TS, it is not TSW. But if the eczema never clears up when using a strong steroid, or comes back as soon as you stop, then this might be TSW. In TSW the skin is redder/darker and more sore than the original eczema, affects different areas of skin, and you may feel physically ill.

Can babies get TSW?

Baby eczema often comes back after the TS is stopped, but this is unlikely to be TSW. If it flares up immediately on stopping, it means that the eczema is still active and still needs active treatment to control it. If it flares up a week or so after stopping the TS, it is more likely that the eczema is just following its natural relapsing and remitting course and a further course of TS is appropriate to control the flare ups. Babies and children can safely continue with intermittent courses of a mild or moderate TS until their eczema clears up, as it usually does before school age. However, if their eczema cannot be controlled in this way they should be referred to a dermatologist. Eczema is complex and has significant effects on both physical and psychological wellbeing. It must be treated effectively to control itch and inflammation, to minimise scratching with its risk of permanent scarring, and to re-establish the skin barrier to prevent the entry of new allergens.

How should people care for themselves when avoiding TS treatment or experiencing TSW?

If you are using a TS and you think it is harming your skin, consult your GP and if necessary request a referral to a dermatologist. You may have developed a side effect that needs different treatment.
Most people can stop steroids safely and will just get symptoms of their original eczema. If you have been using higher strength TS for some weeks you should wean yourself off slowly and not stop suddenly. If you stop steroids and start to get whole body redness this may be TSW.

If you think you have TSW, especially if you are feeling ill, please see your GP urgently and request an urgent referral to a dermatologist. Alternatively, go to a hospital emergency department. Even if the doctors do not recognise the term TSW, erythrodermic eczema and hypoadrenalism from prolonged use of steroids are medical emergencies. If you are under the care of a dermatology service, you could contact your dermatology team and ask for an emergency telephone call-back – some centres may offer this option.

If you are unhappy with using the TS, even if it appears to be helping, discuss your concerns with your doctor who can check for signs of excessive TS use such as thinning of the skin, which is quite hard to detect. If your condition has cleared up with a mild or moderately potent steroid, it is reasonable for your doctor to suggest that you use it again when needed, but it is obviously your choice how you want to manage your eczema. Some alternative treatments for eczema are described below.

What are the alternatives to topical steroid treatment for eczema?

There is a lot of core advice on the NES website about avoiding triggers, managing itch and keeping your skin healthy without needing medicines. These measures should always come before using TS. If these measures are not enough, GPs can also prescribe topical steroids and some will prescribe the topical calcineurin inhibitor (TCI) tacrolimus ointment, usually for areas of sensitive skin. TCI treatment is just as effective as a moderately potent TS, has fewer side effects than a topical steroid, and is sometimes used long term to help prevent flare-ups. Another TCI, called pimecrolimus cream, is sometimes prescribed for people with less severe eczema.

If the eczema is very widespread, doesn’t clear with TS, or has been harmed by the TS, then other medicines may be needed. Patients in this situation should be referred by their GP to a hospital, where dermatologists can reassess, investigate and if necessary prescribe immuno-suppressing drugs such as methotrexate, ciclosporin and azathioprine. These can be very effective but also have side effects and patients will be told about the potential risks and benefits so that they can make an informed choice. Newer targeted drugs are now available including dupilumab and baricitinib; these medicines can work extremely well for people with more severe eczema. Depending on the treatment, they are given by injection or taken orally as a tablet, and cream forms are also being developed. Obviously, it will take time to understand the full effects of these new treatments, but so far, the signs are very good. Drugs like this may well help people with severe TSW.

Are health professionals being told about TSW?

Yes, but doctors are bombarded with new information about the hundreds of drugs and diseases they deal with and it takes time for medical practice to change. In September 2021, the UK Medicines and Healthcare products Regulatory Agency (MHRA) recognised TSW reactions and published information for prescribers and patients. National Eczema Society contributed evidence for the MHRA review. Following the MHRA ruling, information about TSW reactions is now included in the patient information leaflet found in all tubes of topical steroid. The British Association of Dermatologists and some other international medical websites also provide information about TSW.

Why can’t TSW be listed on my medical record?

These terms are relatively new and not yet in the medical textbooks or diagnosis lists. Currently, doctors see them as conditions that people have diagnosed for themselves, like “heart attack” and “nervous breakdown”, which cover too many different specific symptoms and conditions to be useful in understanding the most effective way to treat patients. We need research to define TSW more precisely.

What is steroid phobia?

You may come across the term ‘steroid phobia’. There are different views among doctors and patients about whether someone’s worries about using TS is a phobia (defined as an extreme or irrational fear of or aversion to something). If somebody has suffered harm from a topical steroid, it is rational to fear using TS again and this could be described as ‘steroid avoidance’. However, to avoid all topical steroids out of fear, in all circumstances could be considered a phobia. Unfortunately, concerns about using steroids are increasingly common and some people, especially children, are unnecessarily deprived of their benefit because of a fear of possible side effects including TSW.

Why can health professionals be so defensive about topical steroids and TSW?

Healthcare professionals can be frustrated when people say they have topical steroid withdrawal and decide not to use TS, because there are few other options available to treat eczema inflammation. People with eczema who are avoiding TS may be left suffering unnecessarily. Doctors know that topical steroids can be used safely and effectively, not only for eczema but also for many other conditions. TS are recommended as the first-line flare treatment for eczema in both national and international medical guidelines.

Around 20% of all children in the UK suffer from infantile or childhood eczema. Practically all will have benefitted from topical steroids at some time and most become eczema-free over time with no adverse effects. A relatively small number continue with eczema when they are older, and that is the natural history of eczema, not necessarily a result of topical steroids. Denying patients topical steroids and making people afraid of using topical steroids has the very real potential of causing more harm than good.

Do doctors receive funding from drug companies who make topical steroids?

No, the vast majority of doctors have no vested interest in what they prescribe. A very small number may own shares in pharmaceutical companies or are paid for consultancy advice. They are bound by tight transparency rules from the General Medical Council (GMC) and would be subject to disciplinary procedures if these rules were broken. They declare such interests online (see ABPI) and it should not influence their prescribing. UK health professionals follow evidence-based guidelines published by the National Institute for Health and Care Excellence (NICE) and Scottish Medicines Consortium (SMC) in Scotland: NICE and the SMC are meticulous about this and any financial interests of their advisors are available on their website.

Does the National Eczema Society receive funding from drug companies who make topical steroids?

National Eczema Society exists to make life better for people with eczema and their families. We work with a range of organisations to achieve our aims including professional and regulatory bodies, research organisations, other charities and companies. While partnership working is important, we will never compromise our independence as a patient organisation, always putting people with eczema first.

We are open and transparent about our work with pharmaceutical companies and any financial support we receive. We recognise that pharmaceutical companies produce a range of medicines to treat eczema and many people with eczema rely on these treatments, which are prescribed through the NHS. The companies we work with do not influence our activities in any way, either explicitly or implicitly. Our advice is based on clinical guidelines and research evidence and we do not recommend or endorse any specific products or treatments.

We have agreements in place for each of our company partnerships and our work with pharmaceutical companies is underpinned by our own Partnership Policy, as well as the rigorous Association of British Pharmaceutical Industries (ABPI) Code of Practice.

Why won’t doctors prescribe homeopathic, herbal or complementary therapies?

Doctors working in the NHS prescribe evidence-based treatments and follow guidelines approved by the regulatory bodies such as the MHRA, NICE and SMC. They are not qualified to provide alternative medicines, but some can access complementary therapies. All doctors should consider the mental health impact and psychological and social needs of people with eczema, and involve other agencies if necessary and available.

Is there any research into the fundamental causes of eczema?

Yes. Eczema is a complex condition involving our genetic make-up, our immune system and our environment. People with atopic eczema (the most common type) are genetically predisposed to develop antibodies to many and varied things in the environment. We can’t change our genetic make-up and changing our environment is difficult, so most treatment and research focuses on the immune system. Steroids are something of a blunt tool – they suppress “good immunity” that protects us from infection, as well as “bad immunity” that attacks our bodies and makes us react to otherwise harmless things in the environment. We now understand much more about bad immunity and drugs are being developed to target the exact chemicals involved, without the side effects that can happen with steroids.

Is there any research into TSW?

TSW is still very new so there has been limited research to date. NES is actively encouraging more research in this area. Research is needed to define these conditions more clearly, to find out how common they are and to clarify the limits for safe use of topical steroids. We also need to find out exactly what happens to the skin with prolonged steroid use: scientists have considered various possible mechanisms but at the moment the evidence is very limited.

Further reading

National Eczema Society and British Association of Dermatologists’ joint position statement on TSW: https://eczema.org/wp-content/uploads/Topical_Steroid_Topical_Withdrawal_Joint_Statement_Feb_2024.pdf
MHRA information about TSW: https://www.gov.uk/drug-safety-update/topical-corticosteroids-information-on-the-risk-of-topical-steroid-withdrawal-reactions
Information about topical steroids: https://eczema.org/information-and-advice/treatments-for-eczema/topical-corticosteroids/
Information about managing eczema: https://eczema.org/information-and-advice/treatments-for-eczema/
Association of British Pharmaceutical Industries (ABPI) Code of Practice: https://www.abpi.org.uk/publications/code-of-practice-for-the-pharmaceutical-industry-2021/
Association of British Pharmaceutical Industries (ABPI) Disclosures: https://www.abpi.org.uk/reputation/disclosure-uk/
Review of recent literature on using topical steroids: Lax SJ, Harvey J, Axon E et al. Cochrane Database of Systematic Reviews. 2022(3) https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013356.pub2/full
Topical steroid withdrawal syndrome: time to bridge the gap; Cotter C, Burton T, Proctor A, Moss C, Flohr C, British Journal of Dermatology, July 2022 https://doi.org/10.1111/bjd.21770

Topical Steroid Withdrawal (TSW)

Topical Steroid Withdrawal (TSW)

Introduction

Related Documents

Topical steroid withdrawal joint statement 2024

How safe are topical corticosteroids?

Topical steroids factsheet

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