Topical corticosteroids (TCS) have been a cornerstone in the treatment of eczema and other skin conditions for over 50 years. Widely recognized for their effectiveness in managing flare-ups, these steroid creams and ointments have become essential for millions. However, what many people don’t realize is that for some, long-term use of these steroids can lead to a phenomenon known as Topical Steroid Withdrawal (TSW), also referred to as steroid addiction or red skin syndrome. Despite its debilitating effects, TSW remains a relatively unknown condition, leaving many patients without proper diagnosis or support.

As the awareness around TSW grows, it is vital for both patients and healthcare professionals to recognize the signs and take preventive measures. Understanding this condition can significantly improve the quality of life for those who suffer from it and help prevent unnecessary complications in the future.

 

 

What is TSW?

Topical Steroid Withdrawal is a condition that occurs when an individual stops using topical corticosteroids after prolonged use. These medications, including hydrocortisone creams, are typically prescribed for conditions like eczema, atopic dermatitis, and contact dermatitis. They work by reducing inflammation in the skin, offering quick relief from flare-ups. However, discontinuing their use can lead to severe symptoms that are often worse than the original skin condition.

TSW symptoms can vary but typically include intense redness, burning, and stinging sensations, swelling, and severe skin dryness. In many cases, the skin may appear to have a sunburn-like rash, often spreading to areas that were never previously affected. This drastic reaction to the sudden absence of steroids can last for months or even years in some cases.

 

 

 

Debilitating Symptoms of TSW

The potentially debilitating withdrawal symptoms of TSW can include:

• A burning sensation
• Flaking, shedding, peeling, or spreading skin
• Swelling or dermatoses in affected areas
• Erythema, or redness of the skin
• Wrinkling, thin skin
• Oozing, pus-filled bumps
• Steroid dermatitis, which can cause nodules and papules to form on the skin
• Pain
• Insomnia
• Hair loss
• Shivering
• Fatigue
• Depression and disability, if withdrawal persists for a longer period of time

 

 

 

These symptoms are more than just physical discomfort, they affect every aspect of a person’s life. Briana Banos, a long-time sufferer of TSW, explains the profound emotional and social toll this condition can take. “It touches every facet of your life,” she says. “It means quitting jobs or needing some sort of physical and financial support, a burden left to a family member or spouse. Emotionally, it is unbearably exhausting, and causes an avalanche of issues: loss of self, passion, partners, and peace. And, without being able to truly thrive out in the world (be it months to multiple years of isolation), a TSW sufferer can be impacted harshly with the destruction of their social life or social outreach. It is an indefinite prison sentence and a type of suffering I wouldn’t even wish on an enemy.”

 

The Role of Briana Banos and Her Documentaries

Briana Banos, who has been living with TSW for years, has become an advocate for raising awareness about this often misunderstood condition. Through her work, including two insightful documentaries: “PREVENTABLE” and “STILL PREVENTABLE“, she has brought the stories of TSW sufferers to light. In both films, Banos interviews individuals who are experiencing TSW, as well as dermatologists and medical professionals who are aware of the condition.

 

 

 

 

These documentaries play a pivotal role in educating the public about TSW and the need for better recognition within the medical community. They show the struggles of those living with TSW, offering a platform for them to share their stories and raise their voices in a society where this condition is often dismissed or misunderstood. Briana’s efforts help to bridge the gap between patients and healthcare providers, fostering a deeper understanding of the impact TSW has on individuals. At Waxelene, we are so proud to have supported Briana in both documentaries on Topical Steroid Withdrawal.

The only thing more impressive than producing, directing, filming, narating, writing and directing an A+ documentary, is when you do it while your skin is constantly peeling off from TSW. It is such an important story to be told to draw awareness to TSW. Hopefully the mainstream medical community can accurately document what is happening to millions of people when they come off of topical steroids.

We strongly recommend that you watch this documentary before starting topical steroid treatments for eczema so you can accurately weigh the risks vs benefits. Please share this link with anyone else who may be considering topical steroids as a treatment for eczema. Thousands of people have successfully treated their eczema with Waxelene aerated balm and avoided using topical steroids prescribed by their dermatologist. Our new range of body wash is safe for people with all types of sensitive skin. Many patients with TSW have found relief from using Waxelene products. Our goal is to help people, that’s why we don’t cut corners on quality and support community education.

 

Why Should We Be More Aware of TSW?

Despite its impact, TSW remains underrecognized by both patients and many healthcare providers. According to Kathy Tullos, RN, president of the International Topical Steroid Awareness Network (ITSAN), “There’s an invisible line between your ‘typical’ eczema and TSW.” This makes it challenging for patients to realize when they have crossed into withdrawal territory. Early recognition of symptoms such as spreading rashes, a shift from itching to burning, or a change in the appearance of the skin is crucial for early intervention.

Awareness is not only essential for patients but also for healthcare professionals. Dermatologists and other doctors must be better educated on the signs of TSW to offer their patients the most appropriate care. It is important that those suffering from TSW are seen, heard, and believed, especially in the face of a condition that is still misunderstood by many.

In recent years, the conversation around TSW has gained momentum, with platforms like ITSAN providing resources, support groups, and educational materials to those affected. Social media has also played a significant role in connecting individuals with similar experiences, empowering them to share their struggles and recovery journeys.

Many Individuals who are affected by TSW are finding strength in the growing TSW warrior community. These support networks are instrumental in raising awareness and ensuring that people with TSW receive the understanding and care they deserve.

 

 

What Can You Do If You Think You Have TSW?

If you suspect that you are experiencing TSW, it is essential to stop using topical steroids and allow your skin to heal. While this may seem like a daunting task, the first step is to seek support. You can start with a trusted dermatologist, but if that avenue does not yield results, seeking out specialists knowledgeable about TSW can make a significant difference. Virtual consultations are also an option for those who cannot find local practitioners familiar with TSW.

It is important to note that recovery times vary, with some individuals experiencing a lengthy withdrawal process that can last several months or even years. Some patients may find relief through newer biologic treatments or other systemic therapies, though more research is needed in this area.

 

 

The lack of recognition surrounding TSW is a growing concern that affects countless individuals who may not realize the risks of long-term steroid use. As the awareness of this condition spreads, it is crucial for both patients and healthcare providers to be more proactive in identifying and managing TSW. By learning to recognize the signs, adopting non-steroidal treatments like waxelene aerated balm, and fostering a more supportive healthcare environment, we can help reduce the incidence of TSW and improve the lives of those living with eczema and other skin conditions.

Together, we can ensure that TSW no longer remains a hidden struggle, but a condition that is understood, managed, and prevented.