When Treatment Backfires: Understanding Topical Steroid Withdrawal

Have you ever felt like your eczema treatments are only making things worse for you instead of better? For many, stopping the use of steroid creams leads to unexpectedly worse symptoms. That’s an effect called topical steroid withdrawal or TSW. It triggers a cycle of progressing symptoms, so it’s time to understand what TSW is and why it’s become a growing concern for those in the eczema community.

You decided to seek alternative treatments for your eczema, so you stopped using topical steroid creams. However, you suddenly deal with intense redness, burning, or flaking. You’re not alone, and you’re not just imagining things. You could already be suffering from topical steroid withdrawal, or TSW, a condition that’s recently gained attention among eczema sufferers, dermatologists, and researchers alike.

What Is TSW?

Topical steroid withdrawal (TSW) occurs when you abruptly stop using topical corticosteroids (topical treatment applied to the skin to treat eczema, psoriasis, or dermatitis) after relying on them for the longest time. You’ll notice your skin reacting badly to the sudden shift.

You’ll feel a burning sensation, your skin will get intensely red, and there will be flaking for weeks. You’ll think your eczema is getting worse when in truth, it’s TSW. Some refer to this condition as “steroid addiction” or “red skin syndrome,” though these terms are still up for debate in the medical community.

According to the National Eczema Association (NEA), TSW is not officially classified as a medical diagnosis yet. However, as expected, most people affected by the condition, particularly those in the eczema community, advocate for recognition.

Why Does It Happen?

The NEA states that prolonged use of topical corticosteroids, especially the high-potency types, or their repeated application on sensitive areas, can make a person overly dependent on them. So, when you suddenly stop using these treatments, perhaps because you want to seek alternative cures, your skin can react to the shift dramatically.

Many have described what they felt as if their skin was “revolting,” flaring wildly with inflammation and turning red, accompanied by an intense burning sensation.

Signs you might be experiencing TSW include:

• • Skin that peels or sheds in noticeable flakes
  • A persistent burning or stinging feeling
  • Unusual redness or darkening of the skin
  • Areas that swell or leak fluid
  • Severe itching

If you experience any or all of the above because of TSW, you will have difficulty sleeping, too, which could lead to emotional distress or even anxiety. Even more challenging is that these symptoms can come and go in cycles. Thus, you can’t predict when you’ll be making a full recovery.

Who’s at Risk and For How Long?

Anyone can experience TSW, but according to the NEA, adult women in particular who have used steroid creams on the face or genitals for over a year are probably the most vulnerable. As for how long you could experience it, there is no one-size-fits-all answer.

Some recover in months, while others can take years. Furthermore, since TSW isn’t officially recognized in many clinical guidelines, its treatment mainly involves self-care, patience, and trial and error.

What Can You Do?

If you are experiencing TSW, you must first talk to a dermatologist, preferably one specializing in TSW. You can also try the following:

• • Lay off the use of topical steroids gradually instead of stopping cold turkey
  • Switch to a gentler, non-irritating skincare
  • Consider making more mindful clothing choices, like switching to purely 100% organic cotton clothing
  • Monitor or track your symptoms and triggers, taking down notes if possible
  • Join a support group for emotional and informational support

There is a global community for people who may be suffering from TSW called the International Topical Steroid Awareness Network, or ITSAN, that describes its mission as, “Advocating, educating, raising awareness, and providing support for a global community living with Eczema and Topical Steroid Withdrawal Syndrome.”

Why Fabric Matters During TSW

Even the softest clothes can feel abrasive against raw, inflamed skin or peeling due to TSW. You can find relief by switching to breathable, chemical-free fabrics that don’t trap heat or moisture. Clothing made from 100% organic cotton is less likely to irritate your skin or trigger allergic reactions. Choosing loose-fitting garments with irritation-free labels can also help minimize friction, giving your skin space to heal.

Hope Is Not Lost

Because of the efforts and advocacy of communities and organizations like the NEA and ITSAN, TSW is gaining attention. Research into the condition is picking up speed, and it may not be long until there are new insights as to the hows and whys of TSW. These insights can lead to a better understanding of the condition and better diagnostics and treatments.