Atopic Dermatitis: are topical steroid-based treatments on the out?

Bringing attention to topical steroid withdrawal AKA #TSW

A social media listening study can be full of surprises, things you simply might not have anticipated. You set up your query, you have all the keywords ready, and a broad idea of the content you will find. Then you dig up something that goes beyond your expectations, a little nugget that just draws your attention, and of course, as a researcher, you just cannot help yourself and start digging deeper to see if there is something more to investigate there.

That happened to me while conducting a study on eczema, atopic dermatitis to be exact, on patients’ attitudes and emotions towards their treatments. I stumbled upon a community of patients sharing their struggles and raising awareness about a little-known and little researched potential side effect of using topical steroid creams. This is known colloquially as TSW, for topical steroid withdrawal syndrome.

Definition of TSW syndrome

According to the US organization NEA (National Eczema Association):“Topical Steroid Withdrawal Syndrome (TSWS), also known as Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), is a potentially debilitating condition that can arise from the use of topical steroids to treat a skin problem, such as eczema.” .

Debilitating is truly the main keyword here. What I found were patients engaged in journaling and sharing their experiences dealing with this potential condition. As is often the case when sharing online, the motivation to do so mainly stems from a desire to help others avoid what they often describe as a very painful experience. Something that can be far more severe than a typical eczema flare-up.

Below are the main symptoms as described by online patients:TSW SML AD study (1)

Implications for patients

1. Impact on quality of life

This can have profound ramifications when it comes to quality of life. This potential condition is often reported to come with a lengthy period of self-isolation as symptoms of red, scaly, and oozing skin make it difficult to appear in public. Beyond the skin’s physical appearance, the simple act of moving is rendered difficult and painful. So, with that, understandably, comes a very heavy emotional burden as self-isolation, pain, and loneliness set in. In more extreme cases, patients are left unable to complete daily tasks without the help of a caregiver while trying to heal. This means that taking a leave of absence from work can be necessary as well.

The most striking part for me was how some of those patients went on treating this potential condition. In what an online patient referred to as the “cold turkey” strategy, the idea is to discontinue all treatments and allow the skin to regenerate itself naturally. This more extreme strategy discards any pharmaceutical products in fear of further dependence.

No consensus on how to manage and heal from TSW. It ultimately depends on patient view of treatments and their ability to endure symptoms:ELEPHANT SKIN Skin folding in different areas (eyes, hands, knees, wrists, thighs, back) (1)

2. Relationship with HCPs

This is all compounded by the difficulty of getting support from healthcare professionals. A TSW diagnosis is often controversial. As reported by patients online, few dermatologists appear to know about this condition or to take it seriously. Granted, symptoms can be remarkably similar to those of a typical eczema flare-up, further flouting the delineation between the two. This means that those patients do not benefit from medical support and can depend on each other to devise strategies to deal with symptoms.

This verbatim from an online patient illustrates how difficult this can be (slightly edited to protect anonymity):

“It’s now been 6 months since Ive last used topical steroids or immunosuppressants and I’m currently in the best position with my skin I’ve been in for 2 and a half years 💪🏻
I’ve had doctors laugh at me, a small few listen but to only tell me I’m wrong, my dermatologist thinking I’m a crazy woman, but look at me now. You told me I have severe eczema and to just accept it, that I will have it for the rest of my life, and to consider a more long term immunosuppressant like methotrexate/ dupixant and anti-depressants (…)”

The power of social media listening

This, in my humble opinion, and I reassure you, as a professional working in social media, I am not at all biased, but in all seriousness, this illustrates the power of social media when it comes to being a facilitator of connection between people struggling with similar conditions. Especially in chronic afflictions, where long-term remission is never guaranteed. The TSW community appears to be a place for sharing information and providing support for those that have to face the reality of going through those tough symptoms.

1. Emotional impact and influence

However, there is another side to these communities where more extreme voices can influence other patients trying to get information about their condition and the best course of action to follow. Patients especially those suffering from chronic conditions rely more and more on resources found online, whether they come from reliable sources and/or their peers, often through exchanges on forums.

In this study, I did come across accounts of patients reporting fear and anguish over reading some of these testimonies. TSW appears to be a condition that creates a strong emotional response and a need for a segment of online patients to share aggressive reservations about topical steroid treatments. The lack of official guidance and research on this topic leaves a vacuum that can be filled with unreliable information, extreme opinions, and a propensity to fearmonger by some.

What is left here is a demonization of topical steroid treatments and all medical-based treatments prescribed to treat atopic dermatitis. Of course, this comes from only a portion of patients online, but as is often the case with social media, they can have a louder, persistent, and more vehement voice that is influential or, at the very least, can trigger doubts and questions.

This verbatim illustrates some TSW-suffering patients’ views on treatment. (Edited slightly to protect anonymity):

“ (…) Also - dupixent is not a solution just like topical steroids are not a solution. They are both band-aids that simply mask symptoms. Going through TSW is your body relearning how to function on its own without the added burden of pharmaceuticals. It’s a true way to actually heal.”

Also read our article: Social Media Listening, Intelligence, Monitoring; what difference does it make?

2. Social media as an amplifier

This research on TSW also highlighted how much of an amplifier online medium can be, bringing to light obscure issues closer to the mainstream. After all, TSW syndrome itself is not a new phenomenon, the first possible case reported in literature dates back to 1979.

More is being done now online to help bring awareness to this condition. Some dermatologists are at the very least aware of it nowadays because of strong minded patients. There is also an association dedicated to bringing resources to patients and a documentary has been released in recent years to help bring more awareness to this subject. It will be very interesting to follow how this evolves in the future and the impact this has on topical steroids and other treatments.

Also read our article: What is the social impact of disease awareness month? the example of Atopic Dermatitis


In my practice, I have seen how much social media intelligence offers a huge opportunity to uncover insights about the state of mind of patients when it comes to challenges and difficulties they have dealing with a chronic condition. It is also an occasion to discover the influences at play for patients trying to make informed decisions about their health.

And you, what do you think of TSW? Are you a patient suffering from it? Do you recognize yourself in this post?
Are you a healthcare professional? Have you ever come across this topic with your patients? How do you manage it?
Find out more about our experience in Atopic Dermatitis



We are proud to launch a new initiative: PatientLIVES a recorded 15-minute session of testimonies with patients interviewed by an APLUSA expert to collect uncovered challenges experienced with the disease.

Our first episode is about Atopic Dermatitis through the angle of TSW (Topical Steroid Withdrawal).

Discover in this short video questions that will be asked to the patient, and be a part of the interview by suggesting your own questions to the patient regarding TSW! Please write in the comment section below.


Edit : short after this article, the PatientLIVES initiative led to this recording of our episode on Atopic Dermatitis : clcik to watch this episode