It affects far more than your skin

Over the last few months, I’ve spoken to people living with Topical Steroid Withdrawal (TSW).

I thought I understood it.

I knew about the burning, redness, peeling, itching and oozing.

Then I started talking to the people actually living through it.

And the part that has stayed with me most is what you can't see.

People cancelling plans because they don't want anyone to see them.

People barely sleeping.

People avoiding mirrors and photographs.

People being frightened to put anything on their skin because they don't know whether it will help or hurt.

People feeling dismissed by doctors.

People feeling completely alone.

And people constantly thinking about their skin.

Will it be worse tomorrow?

Will I sleep tonight?

Can I leave the house?

Will this cream burn?

Does anyone actually believe me?

That is an enormous mental load.

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The mental health impact is huge

The 2020 Eczema Unmasked survey of 530 adults with eczema found that:

74% said eczema negatively affected their mental health.

89% said it significantly reduced their quality of life.

Nearly 1 in 3 felt healthcare professionals did not fully understand the impact eczema had on their mental wellbeing.

A newer UK survey published in 2026 found that 81% of people living with a skin condition felt more anxious or depressed during flare ups, 64% said their skin affected their mental health every day, and 73% had never had the mental health impact of their condition discussed by a healthcare professional.

These figures are for skin conditions and eczema rather than TSW specifically.

But they show something important.

Skin problems can take over your life.

TSW can make that experience incredibly difficult.

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So, what actually is TSW?

Topical Steroid Withdrawal describes a collection of symptoms that can occur after stopping topical corticosteroids, particularly following frequent or prolonged use.

People can experience:

• intense redness
• burning and stinging
• severe itching
• peeling and shedding
• swelling
• oozing
• extreme sensitivity
• changes in where the reaction appears

One of the problems is that TSW can look very similar to eczema.

That makes diagnosis difficult.

Researchers are finally starting to tackle this.

In 2026, a group of dermatologists developed preliminary diagnostic criteria for TSW, identifying 18 features they considered important, including escalating steroid requirements, changes in the pattern or distribution of the skin, neuropathic pain and severe burning.

It is early research.

There is still a lot we don't know.

But having agreed criteria gives researchers something much more useful to work with.

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If you think you have TSW, take evidence with you

If you feel like your doctor isn't listening, go armed with information.

Write down:

Your steroid history

• What you used
• The strength, if you know it
• Where you used it
• How often
• How long
• Whether you needed stronger steroids
• What happened when you stopped

What changed

• Did the redness become much more intense?
• Did burning become a major symptom?
• Did the reaction spread?
• Did your skin become unusually sensitive?
• Did you develop peeling, swelling or oozing?
• Does it feel different from your usual eczema?

Take photographs.

Keep them.

Then you could say:

“I've used topical steroids for a prolonged period and since stopping I've developed symptoms that are different from my usual eczema. I'm concerned about TSW and I'd like this considered alongside other possible causes.”

You can also ask whether infection, allergic contact dermatitis or another skin condition needs to be ruled out.

You deserve to be listened to properly.

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Why some people with TSW stop using moisturiser

You'll find very different advice when you start researching TSW.

Some people moisturise constantly.

Some stop moisturising completely.

Others use a very simple balm.

There is a reason for this.

When skin is severely compromised, even putting something on it can hurt.

Conventional moisturisers can contain water, oils, humectants, emulsifiers, preservatives and several other ingredients.

Some people find that their skin simply cannot tolerate that much.

A simple balm can be a different experience.

It can contain a small number of ingredients and create a protective layer over the skin without needing a traditional water-based emulsion.

For some people, that feels much more comfortable.

For others, even a balm is too much during a severe flare.

There is no single TSW routine.

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Why I think petroleum and paraffin should be avoided

This is one area where I have a strong opinion.

I don't choose petroleum-derived ingredients for my skincare, and I don't think paraffin-based emollients should automatically be the go-to answer for severely compromised skin.

Petrolatum, mineral oil and paraffin are petroleum-derived ingredients.

They are cheap.

They are stable.

They create an occlusive layer.

But occlusion isn't the same thing as repairing the skin barrier.

A 2022 randomised controlled study in adults with atopic dermatitis compared a simple paraffin cream with other emollient formulations and an untreated control.

The paraffin cream did not improve skin barrier function compared with no treatment and reduced levels of natural moisturising factors, while the other formulation improved barrier function and protection against irritation.

That matters! I want to know what a product is actually doing for compromised skin. I don't want to simply coat it.

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Then there's the fire risk

This is another reason I think people should think twice about paraffin.

The MHRA warns that paraffin-containing emollients can build up on clothing, bedding and dressings.

When fabric containing dried emollient residue comes into contact with a flame, it can ignite more easily and the fire can spread rapidly.

The MHRA has reported fatal fires associated with emollient use.

That is a serious consideration when someone is applying an emollient every day, sometimes several times a day, and sleeping in the same bedding it has transferred onto.

There are alternatives.

I would rather use a thoughtfully formulated petroleum-free balm where appropriate.

One important point: the fire risk isn't exclusive to paraffin. The MHRA says paraffin-free emollients can also make fabric more flammable when residue builds up.

So whatever emollient you use, keep it away from smoking, candles, naked flames and significant heat sources.

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A few things you might not have tried

Keep your routine boring

When your skin is awful, you want to throw everything at it.

New cream.

New cleanser.

New supplement.

New detergent.

New shampoo.

Try changing one thing at a time.

It makes it much easier to work out what your skin actually likes.

Look at your laundry

Your skincare isn't the only thing touching your skin.

Think about:

• detergent
• fabric conditioner
• scent boosters
• bedding
• towels
• pyjamas
• clothes

Sometimes stripping things back can make a difference.

Keep your bedroom cool

Heat and sweating can make already uncomfortable skin feel unbearable.

Keep the room cool.

Use breathable bedding.

Don't turn your bedroom into a sauna.

Don't automatically reach for hot water

Hot water can temporarily feel amazing when you're desperately itchy.

It can also leave irritated skin feeling worse afterwards.

Try lukewarm water and shorter showers.

Pat rather than scrub.

Photograph the good days

Take photographs when your skin improves.

Take them during flares too.

It helps you see changes over time and gives your doctor something useful to compare.

Ask about contact allergy

If almost everything you put on your skin seems to make it worse, ask whether allergic contact dermatitis could be contributing and whether patch testing is appropriate.

And remember:

Natural doesn't automatically mean non-reactive.

Essential oils and botanical ingredients can cause irritation or allergy too.

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Give yourself a break from your skin

This might be the hardest piece of advice.

When your skin hurts constantly, you can spend your whole day thinking about it.

Checking it.

Photographing it.

Researching it.

Reading Reddit.

Changing products.

Checking the mirror.

Checking the mirror again.

Try giving yourself an hour where your skin doesn't get to be the main focus.

Watch something stupid.

Listen to music.

Go outside.

Talk to someone who makes you laugh.

Do something that reminds you that you're still you.

Because you are.

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You are not your skin

This is what I keep thinking about after speaking to people with TSW.

The person who doesn't want to leave the house.

The person who hides from photographs.

The person who hasn't slept properly.

The person who is frightened to try another cream.

The person who feels nobody believes them.

The person who has spent hours researching ingredients because they desperately want something that doesn't hurt.

There is a whole person underneath all of that.

And that person matters.

If your skin is affecting your mental health, tell your GP or dermatologist.

Say:

“This is affecting my mental health.”

You don't have to wait until you are completely broken before saying it.

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You don't need the perfect routine

There is so much advice about TSW.

Moisturise.

Don't moisturise.

Use steroids.

Don't use steroids.

Use this oil.

Avoid that oil.

Try this supplement.

Change your diet.

Change your washing powder.

Change everything.

It can leave you feeling like you're failing if you haven't tried it all.

You're not failing.

There is still a lot we don't know about TSW.

The new diagnostic research is a step forward, but more research is needed to understand the condition, distinguish it from other skin conditions and establish effective treatments.

So take things slowly.

Keep records.

Ask questions.

Find people who listen.

Keep your routine as simple as your skin needs.

And give yourself some space to actually live.

Your skin matters. But you are still you.

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Resources & further reading

Topical Steroid Withdrawal

Hsu C et al. (2026)
Topical steroid withdrawal syndrome: developing diagnostic criteria through a modified Delphi method.
British Journal of Dermatology.

Mental health and eczema

Eczema Unmasked
Survey of 530 adults with eczema exploring the impact of eczema on mental health, quality of life and everyday life.

Mental health and skin conditions

Psychodermatology & Me Survey (2026)
UK survey of more than 1,100 people living with skin conditions.

Emollients and the skin barrier

Danby et al. (2022)
Different types of emollient cream exhibit diverse physiological effects on the skin barrier in adults with atopic dermatitis.
Clinical and Experimental Dermatology.

Emollients and fire safety

Medicines and Healthcare products Regulatory Agency (MHRA)
Safety information on emollient residue, clothing, bedding and the risk of severe and fatal burns.

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A note from me

This article is for education and does not diagnose TSW or tell you to stop prescribed medication.

If you think you have TSW, speak to your GP or dermatologist and ask for your symptoms to be properly assessed.

If your skin is painful, swollen, weeping, rapidly deteriorating or you think it may be infected, seek medical help.

And if your skin is affecting your mental health, please say it out loud.

It matters, nit just for you, but the whole TSW community.