Topical Steroid Withdrawal: What It Is, What It Isn't, and What UK Sufferers Wish They'd Known Sooner | Ashleigh's Organics

Eczema & Skin Health
Before you read Ashleigh is not a medical professional. This article is drawn almost entirely from Eczema UK (formerly National Eczema Society) and their joint position statement with the British Association of Dermatologists. It is not medical advice, and it is not a guide to stopping or changing your steroid treatment - that decision needs to be made with your GP or dermatologist.

If you've searched for topical steroid withdrawal, you've probably found two very different worlds: a huge, passionate patient community describing severe reactions after stopping steroid creams, and a medical profession that's only recently started catching up. Both things can be true at once. This article lays out, as plainly as possible, what's actually established, what's still genuinely uncertain, and what to do if you're worried it's happening to you.

What Topical Steroid Withdrawal Actually Is

According to Eczema UK, TSW describes a group of severe reactions that can happen when topical steroids - usually strong or very strong ones - have been used for a prolonged period, typically more than a year. It can appear while you're still using the steroid, but becomes markedly worse on stopping, and is more severe than the eczema it was originally treating.

Reported symptoms include skin turning red (or darker, depending on skin tone) often in areas that never had eczema before, swollen glands, intense itching, oozing or burning skin, excessive flaking, fatigue, hair loss, weight loss, and disturbed sleep or mood. Dermatologists refer to the most severe presentation as erythroderma, or erythrodermic eczema.

TSW vs Your Eczema Simply Coming Back

This is the distinction that causes the most confusion, and Eczema UK addresses it directly. Eczema is a long-term condition that naturally flares and settles - so if your eczema returns some weeks after stopping a steroid, in the pattern it usually follows, that's most likely just eczema being eczema, not TSW.

What points more toward TSW: a rash that spreads to areas that were never affected by your eczema before, skin that doesn't respond to steroids the way it used to, or a reaction that starts immediately and is dramatically worse than your usual flare-ups.

Why There's So Much Confusion - Including Among Doctors

This is a genuinely developing area of medicine, not a settled one. The MHRA (the UK's medicines regulator) formally recognised TSW reactions in 2021, updated that guidance in 2024, and as of June 2025 all UK topical steroid packaging must show its strength on the label. The British Association of Dermatologists set up a dedicated working group in 2024 to review the evidence and produce guidelines, which haven't been published yet.

Eczema UK is honest that there's a real gap between how common TSW appears to be based on social media, and what many doctors see clinically - and that this gap likely reflects several things at once: doctors not always recognising or coding it, some patients avoiding doctors who've been dismissive, and a genuine need for better research and clearer diagnostic criteria. Neither "it's definitely rare" nor "it's definitely common" is a settled fact yet.

This can be a medical emergency If you think you may have TSW and you're feeling unwell - very weak, dizzy, feverish, or unable to function normally - see your GP urgently or go to A&E, and mention you've recently stopped or reduced a topical steroid. Prolonged use of strong steroids can, in rare cases, suppress the body's own steroid production (hypoadrenalism), which needs urgent medical attention. Even if a clinician doesn't use the term "TSW," erythrodermic eczema and hypoadrenalism are recognised medical emergencies.

What UK Sufferers Wish They'd Known Sooner

  • Never stop a steroid you've used regularly for a while abruptly - Eczema UK advises weaning off gradually, reducing strength and/or frequency, under medical guidance
  • Check the strength of your steroid - since June 2025, UK packaging must state mild, moderate, strong or very strong
  • If you're worried a steroid is harming your skin, say so to your GP and ask for a dermatology referral if needed, rather than just stopping on your own
  • You can report side effects directly via the MHRA's Yellow Card scheme
  • Be cautious of unregulated practitioners offering unproven "TSW cures" like red light therapy or cryotherapy - Eczema UK notes there's little evidence behind these

Where a Simple Skincare Routine Fits In

To be clear: there is no product, including ours, that treats or resolves TSW. What some people navigating eczema or a difficult withdrawal period do say helps is simplifying everything else about their routine, so there's less for already-compromised skin to react to. If you're going through this, any change to your skincare is worth mentioning to whoever's supporting you medically, since skin can be extremely reactive during this period.

A NOTE FROM ASHLEIGH

Our CBD Body Butter is two ingredients and nothing else - it isn't a treatment for TSW, and it won't replace medical care. If you're looking for the simplest possible product to have on hand alongside your GP or dermatologist's advice, this is what we make.

See the Body Butter →

Frequently Asked Questions

What is topical steroid withdrawal?

TSW describes severe skin reactions that can occur after prolonged use (usually over a year) of strong or very strong topical steroids, most often appearing or worsening after stopping. Symptoms can include widespread redness, intense itching, oozing, and burning skin, beyond what the original eczema looked like.

How do I know if it's TSW or my eczema coming back?

If eczema returns weeks after stopping a steroid, in its usual pattern, that's most likely the natural course of eczema. TSW is more likely if the reaction spreads to new areas, is dramatically more severe, or the steroid stops working the way it used to.

Is it safe to stop using steroids suddenly?

If you've been using a stronger steroid regularly, stopping abruptly isn't recommended. Guidance is to wean off gradually under medical supervision, since sudden stopping can increase the risk of a severe reaction.

Is TSW officially recognised by UK health authorities?

Yes. The MHRA recognised TSW reactions in 2021 and updated its guidance in 2024, and information about it now appears in patient leaflets for topical steroids. The British Association of Dermatologists set up a working group in 2024 to develop formal clinical guidelines, which are still pending.

The Bottom Line

TSW is real enough that the MHRA and British Association of Dermatologists are actively working on it, and uncertain enough that firm guidelines don't exist yet. If you're worried you're experiencing it, the most important things are: don't stop a steroid abruptly on your own, get medical support rather than trying to manage a severe reaction alone, and treat sudden illness alongside skin symptoms as something to get seen for urgently.

Sources

Ashleigh is not a medical professional and this article is not medical advice. It summarises published guidance from Eczema UK, the British Association of Dermatologists and the MHRA. Ashleigh's Organics Body Butter is a cosmetic product, not a medicine, and is not a treatment for TSW, eczema or any other medical condition. If you are concerned you may be experiencing TSW, or feel unwell, please contact your GP urgently or attend A&E.