What Is TSW?
Topical Steroid Withdrawal (TSW), also known as Topical Steroid Withdrawal Syndrome (TSWS) Topical Steroid Addiction (TSA) or Red Skin Syndrome (RSS), is a severe condition resulting from stopping the use of skin medicines called topical steroids. This can happen whether you were using the steroids to treat a skin problem like eczema, or for other reasons like skin lightening or acne treatment.
Topical steroids come in many forms, asuch as creams, ointments, oils, gels, and lotions. Some are available without a prescription, while others need a prescription from a doctor.
When you stop using these steroids, you might experience red, itchy, and burning skin. This can happen right after you stop the treatment, or even in between treatments. Over time, using the steroids becomes less effective, and the skin problem can get worse and spread to other parts of the body. This worsening is often mistaken for a skin condition getting worse, but it’s actually a side effect of stopping the steroid treatment. Alongside skin symptoms, non-skin-related issues also arise, leading to a syndrome rather than just a skin problem. This can lead to severe complications, leaving sufferers bedridden or housebound for months to years.
TSW is a skin condition that is a side effect of medical treatment. TSW is completely preventable. Keep in mind, not everyone who uses topical steroids will develop TSW, and it’s not clear why some people do and others don’t. More research Is needed and we can start by spreading awareness.
The terms Red Skin Syndrome (RSS), Topical Steroid Addiction (TSA), and Topical Steroid Withdrawal (TSW) are often used interchangeably, but they each have slightly different meanings:
- Topical Steroid Addiction (TSA): This term is used when the body develops a tolerance to the steroid treatment, meaning you need to use more of it to get the same benefit. When you stop using the steroid, your skin can “rebound” or get worse.
- Red Skin Syndrome (RSS): This term refers to the redness, burning, and stinging that can occur when you stop using the steroid. The term “red” refers to inflammation, but not all skin tones will look red when inflamed. See page 14 for a TSW Gallery here
- Topical Steroid Withdrawal (TSW): This term refers to the symptoms that occur when you stop using the steroid, reduce the strength of the steroid, apply it to fewer areas, or use it less often
To find more information on TSW, treatment options, and more check out our TSW magazine and other resources tabs. To find more videos search “Topical Steriod withdrawal” on youtube and you will find patient stories, TSW Journeys, doctors discussions, news, and so much more.
Symptoms of TSW - Is It TSW?
While using topical steroids:
- Skin redness that comes back between applications
- Rashes appearing and spreading to new areas
- Severe itching, burning, and stinging
- The usual treatment doesn’t clear the skin, needing stronger steroids for less effect
After quitting steroids:
- Skin turns bright red, like a sunburn
- Skin can turn purple In darker skin tones
- Skin flakes visibly, seeming like it’s ‘snowing’
- Bone deep itchiness
- Skin oozes fluid
- Skin cycles between oozing, swelling, burning, and flaking
- Difficulty regulating body temperature
- Skin becomes hypersensitive to water, movement, moisturizer, fabrics, temperature, etc.
- Nerve pain, sometimes described as ‘sparklers’ or ‘zingers’
- Swollen lymph nodes
- Swelling (edema)
- Skin becomes thin and wrinkled (known as ‘elephant wrinkles’)
- Hair loss on the head and/or body
- Difficulty sleeping and changes in sleep pattern
- Changes in appetite
- Mood swings, depression, anxiety
- Changes in skin color, becoming lighter or darker (hyperpigmentation/hypopigmentation)
- Swelling and discomfort in wounded areas
- Impaired physical or mental functioning affecting daily life
- Involuntary muscle contractions or jerking
- Thinning or loss of hair
- Delayed or absent menstruation
- Skin becomes rough and thick over time due to continuous moisturizing and/or excessive scratching of broken skin after stopping the use of steroid creams
- Fatigue, depression, and blurred/loss of vision, which are often overlooked but may be associated with TSW. However, these symptoms have not been extensively researched or officially acknowledged as being associated with TSW.
Are you a caregiver or friend of someone suffering TSW?
Here are some tips
Encourage
Positivity
- TSW is a challenging journey, but your encouragement and optimism can make a world of difference.
- Share some healing mantras with your loved one. These affirmations can provide comfort during difficult moments.
educate
Yourself
- Take the time to learn about TSW: what it is, its symptoms, and how it affects those experiencing it. Understanding the condition will help you provide better support.
- Explore TSW-related social media accounts to witness firsthand how this condition impacts people’s lives.
Reassurance
Not Alone
- Remind your loved one that they are not alone. TSW can feel isolating, but there’s a community out there ready to support them.
- Never dismiss TSW as “just eczema.” Respect their chosen treatment path and let them heal in their own way.
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