About Topical Steroid Withdrawal (TSW)

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Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome (RSS), is a condition that can occur when someone stops using topical corticosteroids after prolonged or frequent use. While these medications are commonly prescribed to manage eczema and other skin conditions, their overuse can lead to dependence, where the skin becomes reliant on the steroids to function normally.

When the steroids are discontinued, the skin may go through a withdrawal process that causes severe symptoms, which can be more challenging than the original condition they were meant to treat.

TSW symptoms can vary from person to person, but common signs include:

Red, inflamed skin: Often described as "burning" or "sunburn-like."

• Severe itching: A persistent and intense sensation.
• Oozing or crusting: Fluid may leak from affected areas.
• Skin thinning or cracking: Often around areas where steroids were applied most.
• Flare-ups: Worsening of symptoms after stopping steroids.

These symptoms can be physically and emotionally draining, and the severity can differ based on the duration and potency of steroid use.

Steroids work by suppressing inflammation, but prolonged use can alter the skin's natural balance. Over time, the body may reduce its own anti-inflammatory response, becoming dependent on the external steroid. When the steroids are stopped, the body struggles to regulate inflammation on its own, leading to withdrawal symptoms.

There is growing research indicating that TSW disrupts mitochondrial function.  Mitochondria are the body’s primary energy producers, converting fatty acids and glucose from food into adenosine triphosphate (ATP)—the chemical energy that powers almost all cellular processes. Mitochondria also regulate critical functions such as reactive oxygen species (ROS) generation, cell death (apoptosis), and overall cellular health. 

 So TSW is believed to interfer with essential enzymes, such as Phospholipase A2 (PLA2) and Nitric Oxide (NO):

• PLA2: Maintains mitochondrial membrane integrity, facilitates mitophagy (removal of damaged mitochondria), and supports ATP production. TSW inhibits PLA2, leading to mitochondrial damage.
• Nitric Oxide (NO): Acts as a vasodilator and supports nutrient flow to cells. TSW suppresses NO, causing vasoconstriction, reducing oxygen and nutrient supply to skin cells, and impairing ATP production.

These disruptions create mitochondrial dysfunction, exacerbating oxidative stress, inflammation, and cellular damage in TSW sufferers.

Dr Ian Myles is doing some amazing research on this topic and on his YouTube channel shared some results from a pilot study his team performed at that National Institutes of Health (NIH).  

TSW typically affects people who:

• Used topical steroids frequently or for extended periods.
• Applied high-potency steroids.
• Did not taper off usage gradually.

But it can also happen to people who have used steriod creams infrequently.

It’s worth noting that not everyone who uses steroids will develop TSW. Factors like genetics, skin type, and overall health may play a role.

TSW is often diagnosed based on a combination of:

• Medical history: Including duration and frequency of steroid use.
• Symptoms: Especially if they worsen after stopping steroids.
• Exclusion of other conditions: Such as infections or allergies.

In our experience TSW was not well known amongst medical professionals. But if you can find a dermatologists familiar with TSW, they will be better equipped to recognise and address the condition.

The journey through TSW can be long and challenging, but many people eventually see significant improvements in their skin. Recovery times vary widely, from months to several years. During this time, focusing on supportive care, lifestyle changes, and finding a knowledgeable healthcare provider can make a significant difference.

It took my husband 11 years of trial and error to recover fully. It's our hope to shorten other people's journey by sharing what we learned, supporting resources and details of the key that turned his condition around.