Eczema (also known as atopic dermatitis) is a chronic skin condition that causes inflammation, dryness, itching, and irritation. It’s typically caused by a mix of genetic, environmental, and immune system factors. Eczema comes and goes in flares, and treatment often includes moisturizers, antihistamines, and topical steroids to reduce inflammation.

Topical Steroid Withdrawal (TSW), on the other hand, is not a skin disease—it’s a drug reaction and is violently different. TSW happens when the body becomes physically dependent on steroid medications after prolonged or repeated use. When those medications are reduced, stopped, or sometimes even continued, the body goes into withdrawal, causing severe and often widespread symptoms like burning, oozing, swelling, flaking, nerve pain, insomnia, and more.

While eczema tends to affect certain areas in patches, TSW can spread far beyond the original eczema sites and feel like an entirely different condition. Unfortunately, many people experiencing TSW are told they just have “worsening eczema,” when in reality they are going through steroid withdrawal—and continuing steroids may make it worse.

How much time do you have?

Common Physical Symptoms of TSW:

• Burning skin (often described as “on fire”)

• Inflamed skin (red sleeve or full-body redness)

• Excessive Skin peeling / shedding / flaking

• Oozing / crusting skin

• Increased susceptibility to fungal and bacterial infections

• Extreme dryness (elephant skin / cracked skin texture)

• Difficulty moving due to extremely dry skin

• Raw, open wounds

• Swelling (edema)

• Thin, fragile skin (skin tears easily)

• Rashes spreading to areas where steroids weren’t applied (i.e. inside of ears)

• Excessive itching (intense and constant)

• Nerve pain (burning, zapping, tingling sensations)

• Sensitivity to heat / sweat / friction

• Temperature dysregulation (feeling too hot or cold suddenly)

• Hair loss (eyebrows, scalp, body hair)

• Eye irritation (red, swollen, dry eyes)

• Fatigue / exhaustion / feeling physically weak

• Insomnia / sleep disturbances

• Loss of appetite / weight fluctuations

• Body odor changes (metallic or sour smell from skin)

• Swollen lymph nodes

• Shivering / chills

Common Mental & Emotional Symptoms of TSW:

• Anxiety (especially health-related anxiety)

• Depression / hopelessness

• Body dysmorphia / grief over appearance changes

• Isolation / withdrawal from social life

• Panic attacks / PTSD-like symptoms

• Emotional overwhelm / anger / mood swings

• Loss of confidence / fear of being seen

If you think this list is exhaustive, imagine how we feel…

There’s no clear timeline. Some people experience symptoms for a few months, while others may suffer for several years. Recovery time often depends on factors like how long steroids were used, the strength of the medication, how often it was applied, and individual body chemistry.

There’s no official cure or universally recognized treatment though many have had success with wound healing treatments such as cold atmospheric plasma treatment (CAP) and hyperbaric oxygen therapy. Healing usually requires time, rest, skin barrier support, and symptom management. Some people find relief holistically or with the help of medications like Cyclosporine or Methotrexate, while others focus on minimizing triggers and supporting mental health during the process. One thing is for sure, we will heal one way or another.

No. Not everyone who uses topical steroids will go through withdrawal. Many people use them and taper off without problems.

But what’s especially concerning is that even people who used steroids “as directed” by doctors can still develop withdrawal symptoms. And because awareness of TSW is still limited in the medical community, it’s often misdiagnosed as worsening eczema—leading to more steroids and a cycle that’s hard to break.

-A Word from Liv

“In the first couple years of my withdrawal, every single doctor I saw tried to prescribe more steroids. I was even given a 1 lb tub of it with the directions to “slather it everywhere”. This is why awareness is important. Had I not known about the dangers of steroids, I would not have been able to advocate for myself and decline the prescription.”

Many people recognize TSW through patterns of symptoms like burning, peeling, inflammation, swelling, oozing, nerve pain, intense itching, and skin sensitivity. While these symptoms often appear after stopping steroid medications, some people develop TSW symptoms even while still using them.

There is no formal medical test for TSW. Diagnosis is usually based on your history of steroid use (topical, oral, or injectable) and the timing and nature of your symptoms.

If you suspect you’re in TSW, try to stay calm — the first step is recognizing that this might be what’s happening to you. From there, you can take steps to educate yourself, find support, and make informed decisions about your health moving forward.

Corticosteroids have been used for decades and are still considered the standard treatment for eczema and many other inflammatory skin conditions because they can provide fast, effective relief from symptoms like redness, itching, and inflammation. Most medical training still teaches that these medications are safe when used as directed.

However, many doctors are not fully educated on the risks of long-term or repeated steroid use, especially the potential for TSW. Some may not recognize TSW as a real condition, and others may not be aware of how easily dependency can develop over time — especially with strong or frequent use. This gap in awareness is why many people feel dismissed or misunderstood when they bring up their symptoms. To make matters worse, many doctors insist on more steroids to treat what they assume is “worsening eczema” and the cycle repeats.

More research, education, and patient advocacy are needed to help the medical community better understand TSW and offer safer, more supportive treatment options.