STUDIES

Cessation of Long-term Topical Steroids in Adult

Atopic Dermatitis: A Prospective Cohort Study
Belinda Sheary, FRACGP* and Mark Fort Harris, MD†

Background: Although there is much interest in social media about topical steroid withdrawal, little is known about what
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happens to people who cease long-term topical steroid use.

Objective: The aim of this study was to examine outcomes in adults with a history of atopic dermatitis who were con-
cerned about topical steroid withdrawal and decided to stop using topical steroids.
Methods: Twenty-four participants were recruited from an Australian online support group, and they were emailed a se-
ries of questionnaires over 2 years.
Results: Stopping topical steroid use had a large impact on the participants' quality of life for many months. Overall, par-
ticipants' incidence and severity of symptoms decreased over the study period, and their Dermatology Quality of Life index
scores improved. The majority reported their skin symptoms either had resolved or had only a small effect on their lives
2 years later. However, individuals' quality of life scores fluctuated, and in every questionnaire, large ranges in scores were
seen, demonstrating that the experiences of participants differed considerably.
Conclusions: Counseling patients who are considering discontinuing long-term use of topical steroids regarding their
prognosis is difficult as outcomes vary. However, many will improve significantly over the first 2 years.

T opical steroids are often used regularly for many years by peo-
ple with chronic dermatological conditions, including atopic
dermatitis. Interest in topical steroid withdrawal (TSW), an adverse
effect of topical steroid overuse, is increasing.1 Average new user
views to an international TSW support webpage rose from 5500
per month in the first half of 2019 to 7000 per month in the second
half of 2019 (personal communication from ITSAN President, Jan-
uary 2020). In addition, online support groups for people managing
symptoms after cessation of long-term topical steroid use are
growing: the ITSAN Facebook support group had 3100 members
in September 2017 and 6098 in January 2020 (personal commu-
nication from the group administrator, January 2020). Little is
known about outcomes in people who discontinue long-term
topical steroid use.2–9
Topical steroid withdrawal is thought to be the result of pro-
longed and frequent use of moderate- to high-potency topical ste-
roids, especially where use has included the face.1 It is most often
seen in patients with atopy.2 Typically, a person affected by TSW ex-
periences widespread red skin and itch, in addition to characteristic
symptoms of burning pain, edema, excessive skin exfoliation, and
skin sensitivity. The signs red sleeve6,7 (see Figs. 1A, B) and/or ele-
phant wrinkles6 (see Figs. 2A, B) are commonly seen. Diagnostic
criteria for TSW do not exist.6 Treatment involves stopping the
use of topical steroids and systemic corticosteroids.2
This study sought to examine the symptoms and quality of life
scores reported in adults belonging to an Australian online support
group for people concerned about TSW, who had previously been
given a diagnosis of eczema (atopic dermatitis) and decided to cease
long-term, regular topical steroid use.

From the *Royal Randwick Medical Centre; and †Centre of Primary Health Care
and Equity, University of NSW, Sydney, Australia.
Address reprint requests to Belinda Sheary, FRACGP, Royal Randwick Medical
Centre, 70/73-115 Belmore Rd, Randwick, NSW, Australia 2031. E-mail: belinda.
sheary@ipn.com.au.
The authors have no funding or conflicts of interest to declare.
DOI: 10.1097/DER.0000000000000602
© 2020 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the
American Contact Dermatitis Society. This is an open-access article distributed un-
der the terms of the Creative Commons Attribution-Non Commercial-No Deriva-
tives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the
work provided it is properly cited. The work cannot be changed in any way or used
commercially without permission from the journal.
METHOD
In this prospective longitudinal cohort study, adults who chose to cease
long-term topical steroid use for their atopic dermatitis were followed
up for 2 years. The administrators of the Topical Steroid Withdrawal
Australia Facebook Group agreed to post the study advertisement
(including a link to the Participant Information Letter) on their
webpage for the duration of the recruitment period—March 2016
to September 2017. The study's inclusion criteria were as follows: par-
ticipants had to be older than 18 years, live in Australia, have a history
of using topical steroids for eczema (atopic dermatitis), and ceased
topical steroids within the previous 4 months. There were no specific
exclusion criteria, and participants were not restricted in their use of

316 DERMATITIS, Vol 31 • No 5 • September/October, 2020

Sheary and Harris • Long-term Topical Steroids in Atopic Dermatitis 317

Figure 1. A, Red sleeve: diffuse redness to the upper limb ending abruptly at the palm. B, Red sleeve: diffuse redness to the upper limb ending
abruptly at the dorsal border of the hand.

nonsteroidal treatments. An initial questionnaire requested partici- RESULTS

pants' demographic information, details of their previous treatments
for eczema, and the reasons they decided to stop using topical ste-
roids. Progress questionnaires were emailed 7 times over 2 years.
The outcomes measured in these progress questionnaires were the
presence (or absence) and severity of common symptoms typically
described in TSW, in addition to Dermatology Life Quality Index10
(DLQI) scores. Ethics approval for this project was granted by the
Royal Australian College of General Practitioners National Research
& Evaluation Ethics Committee.
Thirty-six enquiries were received about the study; 31 people met
the eligibility criteria, with 24 of them enrolled; and 19 participants
were followed up for 2 years. Characteristics of the study population
are detailed in Table 1. Most participants were women (71%) and
young: 71% were 18 to 35 years old on enrollment, and none was
older than 54 years. A history of continuous daily topical steroid
use was seen in 42% (10/24) of the participants, who reported apply-
ing topical steroids every day for more than 6 months. Another

Figure 2. A, Elephant wrinkles: thickened skin over the anterior knee with reduced skin elasticity. B, Elephant wrinkles: thickened skin on the extensor
elbow with reduced skin elasticity.
318 DERMATITIS, Vol 31 • No 5 • September/October, 2020

TABLE 1. Characteristics of Study Participants TABLE 1. (Continued)

All Participants, All Participants,
Features N = 24 (%) Features N = 24 (%)
Sex Topical calcineurin inhibitors 8 (33)
Female 17 (71) Oral antibiotics 7 (29)
Age group, y Wet wraps 5 (21)
18–24 6 (25) Baths (oatmeal and/or Epsom salt) 4 (17)
25–34 11 (46) Essential oils 3 (13)
35–44 4 (17) Nutritional supplements 3 (13)
45–54 3 (13) Traditional Chinese medicine 2 (8)
55+ 0 Diet changes 2 (8)
Education level Antihistamines 2 (8)
Did not complete high school 0 Ice pack/cool compresses 2 (8)
Completed high school 10 (42) Cyclosporine 1 (4)
Graduate 10 (42) Amitriptyline 1 (4)
Postgraduate 4 (17) “Allergy shots” 1 (4)
Occupation potentially affecting the skin Antifungals 1 (4)
Yes 5 (21) Probiotics 1 (4)
Concomitant atopic conditions Acupuncture 1 (4)
Asthma 10 (42) Topical treatment from naturopath 1 (4)
Allergic rhino-conjunctivitis 9 (38) *TCS potency was based on classification used in the Australian Medicine Handbook
No. medical problems other than above 2019.
0 16 (67) †Some participants nominated more than 1 reason.
1–3 7 (29) ‡Some participants listed more than 1 treatment.
4 or more 1 (4) TCS, topical corticosteroid.
Age TCSs were first used, y
5 or less 7 (29) participant reported using topical steroids 3 to 5 times per week for
6–12 8 (33) 22 years. Eighteen of 24 participants (75%) had used potent topical
13–20 3 (13) steroids on their face. Nine of 24 participants (38%) had taken oral
21+ 6 (25) prednisone for skin symptoms, and 1 had used cyclosporine. The
Location of TCS use (included, most common reason given for choosing to cease topical steroids
but not limited to) was “topical steroids no longer worked” (15/24, 63%).
Face 23 (96) Mean symptom severity scores are presented in Table 2. These
Genital area 1 (4) scores improved over time. The most common symptoms were itch
TCS potency used on the face*
and excessive skin shedding. Both were present in 100% of the par-
Low 3 (13)
ticipants during the first 6 months. Itch also seemed to be the most
Moderate 2 (8)
bothersome symptom, with the highest mean severity scores over
High 18 (75)
Frequency of TCS use the 2-year study period. Burning pain was noted by 79% (15/19)
Continuous daily use 11 (46) of the participants in the 6-week questionnaire, and 96% (22/23) ex-
Duration of continuous daily use, mo perienced it at some point.
<6 1 (4) The DLQI scores overall improved during the study period (see
6–12 5 (21) Table 3), but at an individual level, these scores fluctuated. The
>12 5 (21) mean and median DLQI scores were highest 6 weeks after stopping
Reasons given for ceasing TCSs† topical steroids for participants at 18.4 and 20, respectively (indicat-
They no longer worked 15 (63) ing a “very large effect on patient's life”). In the 24-month question-
I did not want to use topical 11 (46) naire, 68% (13/19) reported a DLQI score of 5 or less, indicating
steroids anymore
they had no or minimal symptoms, and 32% (6/19) reported a
I was worried about side effects 9 (38)
DLQI score of 0 or 1, indicating their symptoms had no effect on
My doctor advised me to stop 1 (4)
Treatments other than TCSs used for
their life.
management of eczema symptoms
while still using TCSs‡
Moisturizers 23 (96) DISCUSSION
Oral steroids 9 (38)
Of the 24 enrolled participants, 8 (33%) restarted topical steroids,
with 7 doing this within the first 5 months. However, 4 of these
Sheary and Harris • Long-term Topical Steroids in Atopic Dermatitis 319

TABLE 2. Mean Symptom Severity Scores Over 2 Years

6 wk, n = 19* 3 mo, n = 23† 6 mo, n = 20 9 mo, n = 20 12 mo, n = 20 18 mo, n = 20 24 mo, n = 19‡
Itch 2.4 2.1 1.9 1.7 1.2 1.2 1.2
Skin shedding 2.2 1.7 1.4 1.4 0.9 1.0 0.8
Sleep disturbance 2.1 1.6 1.4 1.0 0.6 0.5 0.4
Skin sensitivity 1.7 1.6 1.2 1.2 1.0 1.0 0.9
Ooze 1.2 1.0 0.8 0.7 0.4 0.5 0.5
Swelling 1.3 1.0 0.6 0.5 0.3 0.3 0.3
Burning pain 1.3 1.0 0.6 0.5 0.2 0.4 0.2
Pain, other than burning 0.9 1.0 0.6 0.5 0.4 0.2 0.3
Participants' symptom severity ratings were scored as follows: 0, no symptoms; 1, mild symptoms; 2, moderate symptoms; 3, severe symptoms.
*Some participants enrolled between 6 weeks and 3 months and so did not complete the 6-week questionnaire.
†Some participants had already dropped out by the 3-month mark and so did not complete the 3-month questionnaire.
‡One participant had not reached the 24-month mark at the study conclusion as they had recommenced topical steroid use before stopping topical steroids a second time and
rejoining the study.

participants subsequently rejoined the study after deciding to cease
topical steroids a second time, reducing the final discontinuation
rate to 17% (4/24). This attrition rate was not too dissimilar to an-
other study where 22% of the patients concerned about TSW
recommenced their topical steroid use after previously deciding to
stop using topical steroids.6 The high rate of participants restarting
topical steroid use early is likely a reflection of the unexpected severity
of symptoms experienced—83% (19/23) of the participants reported
their symptoms had a “very large” or “extremely large” effect on their
life 3 months after stopping topical steroids. Patient education and
counseling before cessation of long-term topical steroids in those
with a history of topical steroid overuse is recommended.
A large proportion of participants (9/24, 38%) reported that they
had taken oral prednisone for skin symptoms while they were using
topical steroids. This is high in comparison to other atopic dermati-
tis patient populations studied. In a US study, 5.9% of patients with
atopic dermatitis were found to have used oral prednisone for their
skin symptoms,11 and in a Scottish study of patients with moderate
to severe atopic dermatitis, 19.8% had been prescribed a course of
oral steroids at least once over a 12-month period (some of these
scripts were likely to have been for asthma symptoms).12 It is uncer-
tain whether the high use of oral prednisone in our study population
indicates that the participants had severe symptoms poorly con-
trolled with topical steroids or that they were inappropriately pre-
scribed, or both.
In this study, management of participants' symptoms tended to
be limited to the use of nonprescribed treatments. Two tried light
therapy: one only managed a single session as she found it difficult
to leave her home because of the severity of her symptoms at the
time, whereas the other participant stopped after 4 weeks of 3 ses-
sions per week because of worsening redness and dry skin. One par-
ticipant was prescribed methotrexate by his dermatologist and
mycophenolate by his immunologist but took neither. Another par-
ticipant was prescribed cyclosporine by her immunologist; she also
chose not to take it. Further research is needed to determine whether
people stopping long-term topical steroids have difficulty accessing
nonsteroidal treatments or whether (and why) they choose not to
use these therapies.
The large ranges of DLQI scores seen with every questionnaire
over the 2-year study period highlight the variable experiences of

TABLE 3. Dermatology Life Quality Index (DLQI) Scores Over Study Period
6 wk, 3 mo, 6 mo, 9 mo, 12 mo, 18 mo, 24 mo,
n = 19 (%) n = 23 (%) n = 20 (%) n = 20 (%) n = 20 (%) n = 20 (%) n = 19 (%)
0–1: no effect on 0 0 0 2 (10) 4 (20) 5 (25) 6 (32)
patient's life
2–5: small effect 0 3 (13) 4 (20) 4 (20) 4 (20) 6 (30) 7 (37)
on patient's life
6–10: moderate effect 4 (21) 1 (4) 7 (35) 3 (15) 9 (45) 5 (25) 3 (16)
on patient's life
11–20: very large effect 4 (21) 12 (52) 6 (30) 10 (50) 2 (10) 3 (15) 3 (16)
on patient's life
21–30: extremely large 11 (58) 7 (30) 3 (15) 1 (5) 1 (5) 1 (5) 0 (0)
effect on patient's life
Mean DLQI 18.4 15.8 12.3 11.4 7.5 6.3 5.4
Median DLQI 20 16 10 12 7 4.5 4
Range of DLQI 23 (5–28) 26 (2–28) 27 (2–29) 28 (1–29) 29 (0–29) 26 (0–26) 20 (0–20)
320
the participants. The DLQI scores peaked at different times for dif-
ferent people. For example, 2 participants who reported a “very large
effect on their symptoms” in the 2-year questionnaire had recorded
much lower DLQI scores in earlier questionnaires. This suggests
that they were experiencing a flare of their symptoms at the time
of completing the 24-month questionnaire.
Whether the symptoms reported by the participants were due to
their underlying atopic dermatitis flaring or TSW (or some other
dermatological condition) is unclear. This study did not attempt
to diagnose the skin symptoms of the participants. The development
of consensus diagnostic criteria for TSW6 would benefit future re-
search in this area.
Limitations
This small exploratory study had a number of limitations. Partici-
pants were asked about their topical steroid use history, which in
many cases spanned decades, limiting accuracy. Respondents were
recruited solely online, so it is likely younger participants were over-
represented in the population studied. As participants were mem-
bers of an online support group, it is possible that the respondents
contained a greater proportion of severely affected individuals than
would be seen in the general population. As such, they may not be
representative of all adults concerned about TSW experiencing
symptoms after cessation of long-term topical steroid use.
CONCLUSIONS
This study offers an insight into the outcomes seen in Topical Ste-
roid Withdrawal Australia Facebook group members during their
first 2 years off topical steroids. Most participants had minimal or
no symptoms 2 years after stopping topical steroid use. Overall,
mean DLQI scores fell consistently over the 2-year study; however,
at an individual level, scores fluctuated and symptom severity often
varied. This suggests that counseling individual patients about their
prognosis is currently problematic. A larger study in the future could
potentially tease out prognostic differences in subpopulations with
differing topical steroid use histories or other features in their history,
such as age topical steroids were first used, concomitant atopic con-
ditions, or, possibly, use of oral prednisone for skin symptoms.
ACKNOWLEDGMENTS
The authors thank the members of the Topical Steroid Withdrawal
Australia Facebook Group who assisted with piloting the questionnaires
DERMATITIS, Vol 31 • No 5 • September/October, 2020
for this study. The authors thank Joey VanDyke (former ITSAN
president) and Megan Patterson (founder of the Topical Steroid
Withdrawal—Red Skin Syndrome Support Group on Facebook),
in addition to William Nguyen and Caroline Langdon (Topical Ste-
roid Withdrawal Australia Facebook Group administrators), for
their assistance with participant recruitment. The authors also
thank the participants who generously volunteered their time to
complete multiple questionnaires at a difficult period in their lives.
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