What Is Topical Steroid Withdrawal (TSW)?

Hey, it’s Aunt Julie here to keep on destigmatizing women's health. This month, I want to touch on a topic that has affected many of the women in our community but is still widely unknown about - Topical Steroid Withdrawal.

 

This month's edition of Aunt Julie aims to raise awareness about TSW and to serve as an introduction for those who have never heard of it, who may have eczema, rosacea, or other topical skin issues treated with topical steroids.

 

What is Eczema?

Eczema (atopic dermatitis) is a common skin condition that can appear anywhere on the body and is very common in young children. Usual symptoms include dry, itchy skin that can become inflamed and cracked, causing more than just bodily distress during everyday life. 

 

Flare-ups (when the eczema gets worse) can happen due to many factors, including: environment, diet, unknown allergens, or emotional stress. When eczema is persistent and balms, moisturisers, and ‘keeping hydrated’ aren't working, many consult their general practitioners or dermatologists for treatment, such as topical steroids.

Topical corticosteroids, like hydrocortisone, have been used to treat different types of eczema, including contact dermatitis, and atopic dermatitis ,for over 50 years. They are argued to be one of the most accessible and effective treatments for dermatological issues.

Living with eczema often means every fabric touching your skin matters. Many people in our community find that soft, breathable natural fibres are less irritating than synthetic materials, particularly during flare-ups when skin can become extremely sensitive.

 

 India advocates for Psoriasis awareness and is wearing the Morpho Plunge Bra

What causes Topical Steroid Withdrawal?

Topical steroids are still widely believed to be a relatively safe option but, like any medication, they can cause side effects. In 2021, the MRHA released a statement regarding Topical Steroid Withdrawal (TSW), a devastating side effect caused by the overprescription and overuse of topical steroids. Although awareness has increased in recent years, there is ongoing discussion among healthcare professionals about how to prevent it, how often it occurs, how it should be diagnosed, and the best ways to manage it. 

 

Most medical professionals state that topical corticosteroids are still a safe and effective treatment when monitored closely. According to Eczema UK, side effects may relate to a number of factors:

 

• Age

• Potency of the steroids being used

• If the steroids are being used long term

• If occlusions (bandages or gloves) are being used

• If the prescription is being under or over-applied

Symptoms of Topical Steroid Withdrawal

For many people, the symptoms of Topical Steroid Withdrawal are much more severe than their original skin issues. Symptoms include:

 

• Red, burning skin

• Intense flaking and skin shedding

• Elephant Skin

• “Red sleeves”

• Oozing and weeping of the skin

• Thermodysregulation

• “Zingers” or nerve pain

• Hair loss (in some patients)

Many TSW individuals also face the psycho-social burden of this condition, oftentimes feeling isolated and alone. 

What Should You Do If You Think You Have TSW

If you are experiencing worsening rashes, eczema, or flare-ups, it is important to maintain your routines and prescriptions until you can see your doctor or a specialist.

 

Changes in your skin can have overlaps with other environmental factors, such as:

 

• Changes in temperature

• Changes in overall health

• Infection

If you are concerned, make sure you keep detailed notes and photo evidence of how your skin has changed and the impacts it is having on your life. Ask your doctor for a review, and remember, you can always get a second opinion.

 

At JulieMay, we have worked with a number of women who have experienced the devastation of Topical Steroid Withdrawal and have shared their stories with us in order to raise awareness.

One advocate helping to raise awareness is Briana Banos, whose documentaries Preventable and Still Preventable document the experiences of people living with TSW, as well as interviews from well-known medical professionals championing for more research in this area. It has helped increase public awareness of the condition.

STILL PREVENTABLE: TSW Documentary by Briana Banos

As someone we admire in the advocacy space, we asked Briana to share her own thoughts and expertise on TSW below. Briana's views are her own, based on her lived experience and advocacy work. 

“There is still a far way to go when it comes to Topical Steroid Withdrawal awareness and prevention. At the end of the day, this is preventable. No eczema patient needs steroids, as if it were insulin, and eczema can be treated by many other medications and avenues that are much safer than topical steroids. Until there is scientific evidence pointing to susceptibility, it is unethical to keep espousing that topical steroids are a safe treatment. They were “safe and effective” for me, until they weren’t. 

We are not able to confidently tell people if they will experience this nor when it will happen, and we certainly still don’t have the medical foresight or support from many practicing specialists to “correctly” monitor topical steroid use or diagnose TSW during medical visits. I do not believe every person who uses topical steroids long-term will go through this, but I don’t feel patients should continue being exposed to a treatment that doesn’t have any long-term safety research or proof on whether or not they may experience the harrowing ‘gift’ of Topical Steroid Withdrawal.”

Final Thoughts

If there is one thing I hope you take away from this month's Aunt Julie, it's that you know your body better than anyone. If something doesn't feel right, ask questions, seek support, and don't be afraid to ask for a second opinion. Whether you're managing eczema, Topical Steroid Withdrawal, or another skin condition, you deserve compassionate care and clear information to help you make informed decisions. So often, we are not given the tools or information in the first place, which is why advocating for better education of our own bodies is so important.  

With bountiful boldness, Aunt Julie x