Topical steroid creams and ointments are commonly prescribed to people with eczema and other skin conditions in order to reduce irritation and inflammation. Also called topical corticosteroids, these creams are available over-the-counter and through a prescription from your doctor.
Because of their low price and wide availability, most people don’t think
twice about applying topical steroids to their skin. While many people will use
these creams without adverse side effects, some may experience a
a little-understood syndrome called Topical Steroid Withdrawal.
What Is Topical Steroid Withdrawal (TSW)?
Topical steroid withdrawal (TSW) is a syndrome that can occur after steroid use. According to a 2015 literature review conducted by the National Eczema Association and leading eczema researchers, topical steroid withdrawal is most prominent in cases where patients have used high-potency steroids frequently for a prolonged period of time, or used steroids on the face. Women who blush easily seem to be at higher risk as well, whereas very few cases have been reported in children.
Many healthcare providers have not heard of TSW, and others do not recognize it
because it does not have a formal diagnostic criteria. There has been little clinical
research into TSW to date, although some recent literature reviews, articles, and
op-eds by dermatologists call for more research and clearer diagnostic criteria. The patient advocacy group ITSAN provides information, resources, and support to those going through TSW.
TSW Symptoms
TSW symptoms can vary from person to person, and there is no formal diagnostic criteria. Raw skin with oozing and flaking are common symptoms of TSW, but other possible topical steroid withdrawal symptoms include:
- “Sleeve sign” (Erythema that ends abruptly in a noticeable line at the wrist or ankles)
- “Elephant wrinkles” (Thickened, wrinkly skin, particularly around the knees or other joints)
- Fluid oozing from your skin
- Intense itchiness and burning
- Profuse fine flaking (commonly referred to by patients as ‘snow')
- Swollen lymph nodes
- Increased sensitivity to heat and cold
- Nerve pain described as “zingers”
- Dry, red, irritated eyes
- Hair loss
- Insomnia
- Fatigue
- Weight loss or gain
- Depression and/or anxiety
What Does TSW Look Like?
There are two subtypes of TSW: erythematoedematous and papulopustular.
According to a 2015 TSW literature review, erythematoedematous TSW is more common in patients using topical steroids to treat skin conditions like eczema or seborrheic dermatitis. It involves redness (also known as erythema) and swelling of the skin where the topical steroid was applied, along with scaly or peeling skin. It has a defined border and may or may not involve red bumps.
Papulopustular TSW more often occurs in patients who’ve used topical steroids for acne. This type of rash also involves redness, but red and pus-filled bumps will also be prominent at the area where the topical steroid was applied. The skin won’t peel, and the swelling will be less prominent than with an erythematoedematous TSW.
Ashley P., a young mom and inspiring member of the Gladskin community, described her heart-wrenching experience with TSW, saying it caused “a breakdown of the skin, oozing lymphatic fluid, skin that's hot to the touch, nerve pain to the extreme, [and the] skin's inability to ward off antigens, making me highly susceptible to bacterial and viral infections. Pain is an understatement: Itchiness to the extreme, cracked, open, bleeding skin, hair falling out, insomnia...and the inability to regulate my core temperature — all at once!”
Does Topical Steroid Withdrawal Go Away on Its Own?
Time does seem to heal topical steroid withdrawal. However, managing the long-term symptoms may be painful, uncomfortable, and debilitating. So, how long does topical steroid withdrawal last? The answer to this question isn’t straight forward and will vary from person to person, depending on the severity of their reaction as well as duration of topical steroid use. In severe cases, people have battled TSW symptoms for years. Others only struggle for a much shorter duration of time. So that may make you wonder…
Managing Topical Steroid Withdrawal
Prevention is the best option when it comes to TSW… but we understand it may already be too late for that! If you’re dealing with inflamed, red skin after using or stopping your topical steroid, be sure to visit your dermatologist. Treatment recommendations for TSW typically vary based on your personal situation. Some doctors will recommend you immediately stop your steroid at once, while others recommend tapering off to help minimize your skin’s reaction. Other doctors do not recognize TSW as a legitimate condition in part because there is no formal diagnostic criteria. Finding a doctor who acknowledges TSW and forming a therapeutic alliance can help you determine which therapies are best for you. Visit your doctor to hear their recommendation based on the symptoms you are currently experiencing as well as your history with topical corticosteroids.
For the most part, treating topical steroid withdrawal means managing symptoms while reducing or discontinuing topical steroid use in the most comfortable way possible. Some people find that ice or a cool compress will help with some of the itching, stinging, or burning you may be experiencing. Your doctor may recommend newer eczema therapies, such as biologics and JAK inhibitors, to help with symptoms. Some people forgo the use of moisturizers as they heal from TSW. Others find that steroid-free skincare can be helpful.
Topical Steroid Withdrawal Healing Stages
According to TSW Assist, a crowd-sourced TSW advice site, TSW can progress through 4 distinct phases: inflammation, exudate and oozing, flaking, and remodeling. But it's not always that straightforward - some people can progress through all four stages quickly, others may spend a long time in one stage, and some people may be at different stages on different parts of their body.
Inflammation Stage
Skin inflammation occurs when your immune system has sent out inflammatory cells and cytokines in an attempt to minimize a perceived threat. It is characterized by erythema, warmth, pain, and swelling.
Exudate and Oozing Stage
Exudate is when the skin oozes or weeps fluid. Oozing and weeping are common symptoms of TSW. When the ooze dries, it forms a crust or a scab, which may re-open and ooze again. TSW ooze can be either widespread or limited to certain areas of the body.
Flaking Stage
The proliferation stage is the skin flaking stage. TSW flakes are often very small and fine and are commonly referred to by TSW patients as "snow." Many people with TSW report significant flaking that requires them to sweep and change their sheets daily.
Remodeling Stage
The remodeling stage occurs when TSW skin begins to heal, strengthen, and regain elasticity.
Your TSW Journey
Topical steroid withdrawal can be a frustrating and debilitating condition to live with — affecting all aspects of life, not just your skin appearance. If you’re struggling to cope with TSW, consider seeking counseling for support or sharing with trustworthy friends and family.
When dealing with TSW, prevention is always the best option. To avoid unwanted
withdrawal side effects, be sure to monitor how long and how often you’re applying topical corticosteroids — especially if you’ve been using a higher strength cream. Always consult with your healthcare provider before quitting or tapering off of topical steroid creams and ointments.
Steroid-Free Gladskin
If you’re looking for steroid-free skincare, consider Gladskin Eczema Cream. It’s minimally formulated, clinically proven to reduce eczema symptoms, and contains Micreobalance®, our patented smart protein that restores bacterial balance to the skin.
Sources
https://nationaleczema.org/warnings-for-topical-steroids-eczema/
https://dermnetnz.org/topics/topical-corticosteroid-withdrawal/