Corticosteroid Exposure and Cumulative Effects in Patients with Eczema: Results from a Patient Survey
People with eczema use different kinds of medicine to help with their skin problems. They may take pills called oral medications, like oral corticosteroids (OCS), to help treat eczema. They also use creams that you can buy at a store, called topical corticosteroids (TCS). One example of a TCS is hydrocortisone. Some people may need stronger creams that a healthcare provider (HCP) prescribes or a special mix of antibiotics and steroid moisturizers.
In a study conducted by Allergy & Asthma Network (AAN) and the International Topical Steroid Awareness Network (ITSAN) asked people from different countries about their experiences with eczema, the treatments they use, and what they know about using corticosteroids.
Cumulative Effects in Patients
Cumulative effect is the result of repeat use of a drug over time resulting in unintended outcomes.
Eczema basics
What is eczema? Eczema is a skin condition that makes your skin itchy and dry. Sometimes, it causes the skin to feel bumpy, scaly, or thick.
When you scratch itchy skin, it can harm the top layer of your skin. This can let allergens and bacteria enter your skin and get into your bloodstream. This can make your skin itch even more. Open sores or crusty spots from eczema on your skin could lead to a skin infection.
In the United States, about 1 in 10 people will have eczema at some point in their lives. It often starts in young children when they are babies or toddlers. Some adults can develop eczema.
Here are some common signs of eczema:
- Itchy skin
- Dry, sensitive skin
- Thickened skin
- Skin that is a different color (darkened)
- Cracked skin
- Small, raised bumps
- Swollen areas that ooze
Having eczema can make it hard to sleep and may affect your feelings and daily life. Eczema can happen to anyone.
How do you treat eczema?
Eczema treatment is different for everyone. It depends on the kind of eczema you have and what makes it worse. The first step in treating eczema is to have a good skincare routine. If this doesn’t help, an HCP might recommend a mild cream known as a topical corticosteroid (TCS). If the eczema still doesn’t get better, the HCP may prescribe a stronger TCS or another medicine.
What are Topical Corticosteroids (TCS)?
TCS are creams or lotions that you apply to your skin. They help reduce skin redness and irritation.
You can find TCS in different forms, like:
- Creams
- Lotions
- Gels
- Mousses
- Ointments
- Tapes
- Bandage solutions
TCS comes in different strengths. The strongest types require a prescription. Many people with eczema have tried different TCS to see what works best for them. Using them is usually safe. Some people can have side effects, especially if they use it for a long time.
If someone uses TCS too often or for too long, they might have trouble when they stop using it.
What is Topical Steroid Withdrawal Syndrome (TSW)?
This study uses the acronym TSWS. The acronym was updated to TSW. TSW happens when a person’s skin becomes inflamed, has a burning sensation, itches, and flakes after they stop using TCS.
Before this happens, people typically use more TCS at stronger levels to keep their eczema in control. But once they stop using TCS, they might have new and worse symptoms. Usually, after stopping TCS, it takes a long time for the skin to heal.
Why was the corticosteroid exposure study done?
Allergy & Asthma Network and the International Steroid Awareness Network (ITSAN) wanted to learn more about how people treat their eczema and the effects of using different types of corticosteroids for a long time.
How was the corticosteroid exposure study done?
Between November 2020 to January 2021, 2,160 people from 70 countries answered a 26-question online survey. 1,889 were adults over the age of 18 who had eczema. There were 271 caregivers of children with eczema.
Researchers looked at which parts of the body were affected by eczema and where the TCS was applied. They learned more abut how serious eczema was based on how much of the body had eczema. They also learned people with eczema used many types of corticosteroids for other conditions at the same time.
The description of Topical Steroid Withdrawal Syndrome was shared with the participants
TSW Syndrome is a prolonged and severe rebound characterized by flushed burning skin, severe itch, edema (swelling), and profuse shedding of skin. Leading up to TSW, one needs to use more steroids in higher potencies to manage flares. Upon discontinuation of steroids, one develops new, more severe symptoms. Symptoms commonly dissipate and skin improves over an extended period of time after abstaining from steroids.
What did the corticosteroid exposure study find?
Everyone who participated used or had used a form of corticosteroid to help treat their eczema or other health issues. Most of them had used a type of TCS to treat their eczema in the past.
Only a small number of adults and children had used an advanced medicine called a biologic medication (like dupilumab) for their eczema.
Some adults used over-the-counter TCS for about 14 years and prescription TCS for 15 years. Children used over-the-counter and prescription TCS for almost four years. Most people used both over-the-counter and prescription TCS 1-2 times a day for 15 to 30 days each month. Some adults and children also used a special combined antibiotic and steroid moisturizer (CASM) 1-2 times a day. More than half of the adults and about one-third of the children used strong or extra-strong TCS.
Where were these corticosteroid medications applied to the body?
Many adults and children applied the prescription-only TCS to their arms, legs, face, and back to help their eczema. Adults applied the prescription-only TCS to more than 20% of their skin. Children applied the prescription-only TCS to 25% of their skin.
Are oral corticosteroids used for treating eczema?
One-third of the participants took oral corticosteroids (OCS) for their eczema or related conditions, such as asthma. Adults used OCS for 5.5 years. Children used them for about 3.4 years. Adults and children took six or more courses of OCS over their lives.
Other corticosteroid exposure for non-eczema conditions
About half of the participants used other types of corticosteroids for different health issues.
These included:
- Ear drops with corticosteroids
- Inhaled corticosteroids
- Nasal corticosteroids
- Eye drops with corticosteroids
- Nebulized corticosteroids
Cumulative effects of TCS
Most people were worried about the cumulative effects of TCS over time. Many reported that while using the prescription-only TCS, their eczema often got worse, and it spread to new areas of their body. They experienced inflamed skin, a burning sensation on the skin, and worsening itching.
Concerns with stopping topical corticosteroids and TSW
The use of TCS and CASM can control eczema. However, many people stopped using them because they were not working, or their symptoms had worsened. People using one or more TCS reported symptoms consistent with TSW. Their eczema had worsened while being treated with a TCS. Their symptoms no longer responded to a TCS.
Most people were concerned about TSW. This concern was highest among participants who applied the prescription-only TCS on their face or private area.
Participants who reported going through TSW faced many problems, including:
- Trouble controlling skin temperature
- Spreading red patches on their arms, legs, and other parts of their bodies, even where TS had not been used
- Swelling in their arms, legs, and face
- Nerve pain
- Hair loss
- Burning sensation of the skin
- Skin turning red or darker, depending on skin tone
- Skin peeling or flaking
- Very itchy skin
- Skin that oozes
- New reactions to water, moisturizers, or temperature
- Skin folds
- Difficulty sleeping
- Feelings of sadness, depression, or anxiety
- Thoughts about hurting themselves
Some participants who had TSW reported that they began to feel better. Few adults had TSW symptoms for more than five years.
After learning about TSW, many people realized they had this condition. In many cases, TSW is not being reported to HCP because people are unaware this is a condition or that they have it.
What Does This Mean? What is Next?
- Monitor your TCS usage and see your HCP if you experience new symptoms.
- Track and share all corticosteroid types used with your HCP.
- TCS may be used to treat eczema, but it can have different effects on the body.
- TCS use on over 20% of the body leads to a higher risk for poor outcomes.
- Topical steroid withdrawl is a serious issue for people using any TCS. More studies are needed.
- Mental health is important for people living with eczema .
Study Limitations
All studies have their limits.
For this study:
- Self-Reported Information: People answered questions based on their memory.
- Gender Disparity: Most participants were women with eczema. Results may differ in men with eczema.
“It’s so important that patients with skin disease understand both the benefits and the potential risks of using topical corticosteroid creams (TCS). Topical and other forms of corticosteroids can be appropriate in certain circumstances to help calm down flares. People with eczema can run into trouble when they manage a lifelong condition with these medicines over an extended period of time. Corticosteroids have a cumulative effect, meaning the longer you use them and the higher the potency, the more at risk you are for severe side effects. This study, which reports the results of an international survey of people with eczema, highlights the surprising exposure many have had to a variety of steroid medications along with the impact of that exposure.”
— Kelly Barta, President of ITSAN, a person living with eczema and experienced TSW, and lead author.
Corticosteroid Exposure and Cumulative Effects in Patients with Eczema
Barta K. , Fonacier LS., Hart M., et al.
2023
Annals of Allergy, Asthma & Immunology
DOI:https://doi.org/10.1016/j.anai.2022.09.031
