Why I Give: Sarah Young O’Donnell
Sarah Young O’Donnell, from New York City, shares how she and her family discovered NEA and what it means to her to give back.
Published On: Sep 17, 2024
Last Updated On: Sep 17, 2024
If you have atopic dermatitis (AD), you are likely no stranger to using a topical corticosteroid. These over-the-counter and prescription-strength medications — also called topical steroids — are a frequent go-to treatment option for managing AD symptoms. Despite it being such a common treatment method, many people with AD still have questions about how to properly apply a topical steroid. For example, how much do you apply? When do you start and stop using a topical steroid for daily AD management? Does the potency of the steroid change the quantity that you apply to your body? Are there any side effects from topical steroid use? To help answer some of these questions, this article digs into the medical research to show the current guidelines for applying topical steroids for the management of AD.
Topical steroids have been used for over 60 years to treat skin diseases that are driven by dysregulation of the immune system.1 More than 100 randomized controlled clinical trials have been conducted to evaluate the effectiveness of topical steroids to treat AD.1
While topical steroids have a role to play in eczema management, like any medication, their usage can result in adverse effects, including thinning skin, spider veins, hypopigmentation, as well as potentially, topical steroid withdrawal (TSW).2
“Topical steroids are one of our most effective treatments for AD and, when used appropriately, are safe and cost effective,” said Dr. Kathryn Schwarzenberger, dermatologist and professor of dermatology at Oregon Health & Science University. “We prescribe topical steroids when good skin care and regular use of moisturizers have failed to control AD symptoms.”
According to Dr. Amy Paller, dermatologist and chair of the department of dermatology at Northwestern University, “It is safe to use a strong topical steroid for a few weeks to get AD symptoms under control in an affected area, and then go down to a lower strength steroid or back to moisturizing. It is more long-term use of steroids that can be problematic because it can thin the skin.”
Sometimes healthcare providers may prescribe topical steroids to help prevent AD symptom flares. For example, if there is one body area that continues to flare repeatedly, a provider may recommend using moderate or mild steroids for longer periods of time to keep that area in check.
“Proactive management with topical steroids can involve keeping small areas that are mostly clear in good shape,” explained Dr. Paller. She advises her AD patients, Dr. Paller advises them to “hit it hard [with topical steroids] once or twice a day, get it under control, then get it down to two to three times a week. But continue using it in a small spot, even when it looks good, if you have a spot that flares. This can be confusing to patients.” She recommends that patients confirm with their healthcare provider how long they should keep using the steroid to avoid long-term issues like skin thinning.
There are potential side effects to topical steroids, but Dr. Schwarzenberger said, “We can mitigate the risk of these happening by limiting the time we use steroids. Steroids work so well to decrease itching and allow the skin to heal. Using steroids regularly for a short period of time can often get the skin under control quickly and allow us to move to maintenance, which might involve using steroids from time to time with breaks in between or use of other nonsteroidal medications.”
While topical steroids can be an effective treatment for AD, oftentimes the instructions for use can be confusing or really nuanced once you leave the doctor’s office. One of the problems is that there are no standardized topical steroid guidelines for AD patients to follow — or the guidelines are lacking, confusing or even contradictory.3
“There are not good guidelines to help patients with steroid use and patients don’t always understand how to use them,” said Dr. Steven Feldman, dermatologist and skin pathologist at Wake Forrest University in North Carolina.
This information gap can have impacts on AD care because when patients don’t know how to use a medicine, the likelihood of the medicine being used incorrectly goes up. “One of the biggest issues for AD patients using topical steroids is underuse,” Dr. Feldman said. This even includes simply not picking up the prescription in the first place. Another issue he mentioned is not using it often enough or for long enough to get symptoms controlled.
“Patients really lose out on the ability to get their disease under control when they don’t use enough medicine, and sometimes move to systemic medications because the steroids don’t seem to work,” Dr. Feldman said. Underuse of topical steroids can prolong the time over which steroids need to be used because the symptoms are not being controlled.4
There is also not a common understanding about the use of higher vs. lower strength steroids, and when to switch between strengths or go back to a normal daily skincare regimen of bathing and moisturizing only.3
Currently, there are seven recognized levels of steroid potencies available.5 However, basically no steroids include the potency levels on the tubes or packaging.5 As a result, many patients and caregivers are not familiar with the differences in potency between steroids and why one potency should be used over another for a particular area of the body or for a particular duration, which depends on the circumstances and severity of symptoms.
In a 2024 UK study, 95% of survey respondents wanted topical steroids to be clearly labeled with potency and said that this would help them use steroids more appropriately.5 One study showed that using a labeling system of green for mild, yellow for moderate and red for potent steroids helped increase willingness of parents to use steroid treatment for children.6 It’s possible that potency labels on topical steroid products might help patients know how to use their medications better.
While individual topical steroid instructions can be confusing for AD patients, another issue is that the medical field doesn’t have clear-cut guidelines for healthcare providers either.3 There isn’t consensus around several aspects of topical steroid use for AD, including application amounts, potency, frequency and duration of use.7 There are also many options related to topical steroids, with approximately 30 currently available by prescription in different formulations including cream, lotion, ointment and foam.7
For example:
The majority of guidelines suggest using topical steroids once or twice daily, but there is no clear evidence that twice daily is more effective than once daily.8 This variability in recommendations allows flexibility in the use of topical steroids to address how AD symptoms vary over time for a single patient or are not comparable between patients. Yet the absence of specific guidance makes it important for healthcare providers to align with patients on individual treatment plans for usage in the short- and long-term as AD symptoms improve or worsen.
In terms of topical steroid application, the majority of guidelines recommend using a measurement called the “fingertip unit” (FTU) to guide how much steroid to apply (see figure 1).3 Total body treatment for a 3-month old infant can be as little as 8-10 FTUs while treating the entire body surface area of a 12-year old child might require 40+ FTUs for each treatment.9
“Sometimes a lot of skin needs to be covered with steroids, like the entire body,” said Dr. Paller. “Prescriptions recommend using topical steroids twice a day, sometimes for weeks, which would require pounds of steroids since a 30-gram tube of steroids will barely cover an entire adult body one time,” she explained. “Physicians often also instruct patients to ‘use a thin layer,’ which is not very descriptive. Not having enough or not using enough topical steroid can contribute to their underuse.”
The quantity of steroid can be confusing, especially when a patient doesn’t feel like they have enough product to use. “For larger body surface areas that require treatment, you can try asking your provider to prescribe a larger quantity and then ask your pharmacy to give you one large container rather than several small containers,” suggested Dr. Vivian Shi, professor of dermatology and director of clinical trials at the University of Washington in Seattle.
To help patients understand how much steroid to use, Dr. Schwarzenberger said she often pulls out a tube of Vaseline and demonstrates on her own skin how she wants them to apply topical medications. “This often has to be tailored for each individual, depending upon how severe their symptoms are at the time,” she said. “Figuring out the right dose of a topical medication is not as easy as taking a pill, and patients are often surprised by how much medication I want them to use. So many patients miss out on the benefits of steroids by not using enough.”
The pharmacy experience can also lead to confusion on how to use topical steroids for AD. A survey of pharmacists in eight countries found that while patient questions regarding topical steroid use are common, over 40% of pharmacist recommendations regarding topical steroid use contradicted the current guidelines for standard of care.10 Another study in Japan showed that out of 300 pharmacists surveyed, only 36% described the FTU to patients, 52% used another unit of measure to describe how much steroid to use, and 39% instructed patients to use a thin layer. Many pharmacists in that study had not read AD guidelines for steroid use, but once they did read them, they changed their instructions to appropriate recommendations.11
Pharmacists themselves can have concerns about steroid use and may pass these concerns to patients or caregivers, leading to undertreatment or lack of adherence to the instructions given by the healthcare provider.12 It is very important that pharmacists are knowledgeable about proper use of topical steroids, and that the message given by the healthcare provider is the same message that patients receive when they pick up the medication at the pharmacy.
In addition to demonstrating the quantity of steroid to apply to the skin, many healthcare providers have created resources such as action plans to help their patients navigate their AD treatment regimens. Unfortunately, these tools vary by provider and aren’t universal tools.13
Dr. Paller provides patients with instructional handouts when she first prescribes topical steroids. “I talk to my patients about what to look for in the first two weeks after starting [topical steroid] treatment, and then the next two weeks, etc.,” she said. She also schedules follow-up appointments every couple of months with phone or video visits in between.
Patient and provider follow-up is an important way to make sure topical steroids are being used correctly. When Dr. Feldman puts a patient on a new prescription for steroids, he gives them his cell phone number. He asks the patient to call him in a few days to talk about how they are doing with the medication. “They can tell me exactly how their skin is responding, and I can answer their questions,” he said.
Trust between the provider and patient is also important, especially when it comes to the topic of using topical steroids, where many patients and caregivers are afraid of the potential side effects. For example, when caregivers express fear about starting steroids, Dr. Paller tries to have a long talk with them. “I remind them how much a child is suffering without treatments,” she said. “My decades of experience practicing dermatological medicine helps patients trust and listen to me. As healthcare providers, we need to be straightforward and explain the benefits as well as the risks of topical steroids — or any treatment.”
Patients and caregivers for patients with AD are requesting better educational efforts to help them understand the risks, benefits and principles for using topical steroids. In particular, parents want accessible educational information in various formats: verbal, electronic, printed brochures and education sessions offered by healthcare providers.6
One group in Thailand is currently working to develop educational videos to help inform people about the benefits and risks of topical steroids.14 They assessed the beliefs and level of worry or fear in 150 caregivers of children with AD before and after showing the educational videos. Not only did the caregivers’ worry and concern reduce after seeing the educational videos, they also expressed less fear of using steroids on sensitive body parts like eyelids.14 They were also willing to use more steroid at first to get the disease under control, and because of this, the patients experienced decreased symptoms and were able to go off the steroids sooner.14
Some researchers are working to develop tools to help solve some of the lack of clarity around effective steroid use. For example, new tools are being tested to help physicians calculate how much body surface area is covered with AD lesions so they can prescribe enough topical steroids for each patient to use.15 The Cutaneous Inflammatory Disease Extent Score is a picture-based tool that allows physicians and patients to circle all the different body areas being impacted by AD.15 A digital tool is also being developed to allow physicians to draw a map of affected body areas to help them calculate how much steroid to prescribe. Tools like these may help bring more clarity to how much steroid should be used, but more testing on the effectiveness of these visual tools is still needed.15
Dr. Feldman would like to see more development of apps or tracking systems to help with topical steroids. For example, apps that could be used to help remind patients that it is time to use their steroids, or help patients know they used enough medication with each application. In the future, maybe an app could give patients an idea of how much of their tube of steroids should be used at various time intervals.
Currently, there are a few eczema apps available to help patients track their symptoms and communicate back to their healthcare providers between visits. For example, EczemaWise, an app by the National Eczema Association, allows you to track your AD treatments and set treatment reminders, alongside documenting AD symptoms, triggers and more. Apps like these are one way to help improve communication between patients and providers.
References:
1. Eichenfield LF, Tom WL, Berger TG, et al. Guidelines of care for the management of atopic dermatitis: section 2. Management and treatment of atopic dermatitis with topical therapies. J Am Acad Dermatol. 2014;71(1):116-132.
2. Sidbury R, Alikhan A, Bercovitch L, et al. Guidelines of care for the management of atopic dermatitis in adults with topical therapies. J Am Acad Dermatol. 2023;89(1):e1-e20.
3. Van Halewijn KF, Lahnstein T, Bohnen AM, et al. Recommendations for emollients, bathing and topical corticosteroids for the treatment of atopic dermatitis: a systematic review of guidelines. Eur J Dermatol. 2022;32(1):113-123.
4. Jeziorkowska R, Sysa-Jedrzejowska A, Samochocki Z. Topical steroid therapy in atopic dermatitis in theory and practice. Postepy Dermatol Alergol. 2015;32(3):162-166.
5. Moss C, Haider Z, Proctor A. Do people with eczema and their carers understand topical steroid potency? Results of two surveys. Clin Exp Dermatol. 2024;49(3):267-270.
6. Wilson F, Harnik E, Gore C. A labelling system improves parental comfort and willingness to use topical corticosteroids for paediatric atopic dermatitis. Skin Health Dis. 2021;1(1):e11.
7. Stacey SK, McEleney M. Topical Corticosteroids: Choice and Application. Am Fam Physician. 2021;103(6):337-343.
8. Chiricozzi A, Comberiati P, D’Auria E, Zuccotti G, Peroni DG. Topical corticosteroids for pediatric atopic dermatitis: Thoughtful tips for practice. Pharmacol Res. 2020;158:104878.
9. Long CC, Mills CM, Finlay AY. A practical guide to topical therapy in children. Br J Dermatol. 1998;138(2):293-296.
10. Su JC, Murashkin N, Wollenberg A, et al. Pharmacist recommendations regarding topical steroid use may contradict the standard of care in atopic dermatitis: An international, cross-sectional study. JAAD Int. 2021;4:13-14.
11. Oishi N, Iwata H, Kobayashi N, Fujimoto K, Yamaura K. A survey on awareness of the “finger-tip unit” and medication guidance for the use of topical steroids among community pharmacists. Drug Discov Ther. 2019;13(3):128-132.
12. Koster ES, Philbert D, Wagelaar KR, Galle S, Bouvy ML. Optimizing pharmaceutical care for pediatric patients with dermatitis: perspectives of parents and pharmacy staff. Int J Clin Pharm. 2019;41(3):711-718.
13. Johnson JK, Loiselle AR, Butler L, Begolka WS. Action plans for atopic dermatitis: A survey of patient and caregiver attitudes. JAAD Int. 2023;12:184-185.
14. Sitthisan M, Wananukul S, Chatproedprai S, Tempark T, Chantawarangul K. Unveiling the potential: Enhancing caregiver knowledge through video education to address topical corticosteroid concerns in children with eczematous dermatitis. Pediatr Dermatol. 2024;41(2):221-228.
15. Speeckaert R, Hoorens I, Corthals S, et al. Comparison of methods to estimate the affected body surface area and the dosage of topical treatments in psoriasis and atopic dermatitis: the advantage of a picture-based tool. J Eur Acad Dermatol Venereol. 2019;33(9):1726-1732.
Sarah Young O’Donnell, from New York City, shares how she and her family discovered NEA and what it means to her to give back.
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