TSW: Myth or Fact?

Topical steroid withdrawal (TSW) has been a hot topic for a while now. I write about it often seeing as I am in the community.

I grew up with eczema most of my life, the worst of it in my early twenties. And now, having been in the TSW community for more than 8 years, I've seen my fair share of negativity. It's not a well-understood illness and is in desperate need of more research. We are very aware of that front. However, that doesn't make it fake. Or does it?

Who said topical steroid withdrawal was fake?

TSW is a myth. Just writing those words hurts. Why? Because they were said in a published medical journal in January 2023.¹ Even after years of being mentioned in research, we were targeted by 3 researchers in Ireland.

Their paper is titled "#Corticophobia: a review on online misinformation related to topical steroids."¹

Right off the bat, I knew it would be biased. There is a tone in the title, the hashtag (#) subtly ensuring that anything on the internet must be a joke.

How did the study describe topical steroid withdrawal?

Jumping right in, they compared topical steroid withdrawal to a famous Irish proverb: "Tógfaidh dath dubh ach ní thógfaidh dubh dath," which means "colour will take black, but black won't take colour." Translation: Once spoken, a lie is permanent.¹

Pretty ruthless coming from medical professionals.

Which phrases were researched?

It then goes on to state what words they researched online to help collect data. The phrases were:¹

• Topical corticosteroids
• Misinformation
• Disinformation
• Conspiracy theory

If that isn't called a bias, I don't know what is!?

For research to be taken seriously, there must be a robust look at the subject, not a one-sided affair. It's as if they were looking for a reason to negate its existence.

What did the paper dispute on allergies?

As I read on, it sounded more like a gossip tabloid. They even dismissed food allergies and intolerances as a cause of atopic dermatitis.¹ If anyone knows what a fabricated lie that is, it's this community. Most of us are well versed in the allergic realm, myself included.

How do they believe steroids should be prescribed?

One paragraph tries to find defense in listing the guidelines for topical steroid use. It states: "A systemic review examining TCS [topical corticosteroids] safety found no evidence of skin thinning when TCS were used intermittently to treat acute AD flares, or as 'weekend therapy'..."¹

That's a lovely observation. However, I can guarantee that most of us are not prescribed steroids in this manner. Most of us had/have reoccurring prescriptions and have been told to use them when needed (vague) and/or use them twice daily. That is not intermittent.

They go on to state that steroids are "...extremely safe when used in line with current guidelines."¹

Now, I already have an issue with the current guidelines (critique for another time), but the guidelines themselves are not being adhered to! I appreciate a good reference, but if the reference is not being followed then the argument is mute.

What are their views on patients and ITSAN?

In the end, they just pointed fingers at patients. They made us look silly and spoke down to us, even though they called us "educated" within the article. ITSAN, the nonprofit for TSW, was even specifically called out as a source of misinformation.¹

Does other research suggest TSW is real?

Not long after the research paper surfaced, spurring much debate, another UK article swooped in to save the day. Funny enough, it was published under the same journal that printed the first paper. Andrew Proctor, the CEO of the Eczema Association in the UK, is one name on this document.²

It is titled "Topical steroid withdrawal is not a myth." Thank you!²

In it, the writers reprimand the researchers, even calling out the safety of topical steroids. "There are no studies, to our knowledge, examining prolonged intermittent use of potent TCS for eczema..."²

Moreover, it went into detail about how there needs to be better communication with patients and doctors. It also defended us, as patients, with how distressing the article has been on the community.

What's to come for the TSW community?

There is still so much to be done for this suffering and ostracized TSW community. But, thankfully, there was a rebuttal to the audacity of those researchers. More will come of it. I cannot wait to see what new research highlights about the condition. Hopefully, we can put an end to the preventable pain.

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