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"steroid withdrawal"
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Health Care Utilization in Patients With Atopic Dermatitis Experiencing Topical Steroid Withdrawal: Observational Cross-Sectional Social Media Questionnaire Study
by
Sandström Falk, MariHelen
,
Alsterholm, Mikael
,
Sigurdardottir, Gunnthorunn
in
Administration, Topical
,
Adult
,
atopic dermatitis
2025
Topical steroid withdrawal (TSW) is a controversial skin condition among health care providers due to a lack of evidence, but it has an impactful and growing presence on social media. There are few previous reports of health care utilization for symptoms attributed to TSW.
This study aims to investigate health care utilization and requests as well as information sources for TSW among patients with atopic dermatitis (AD).
This observational cross-sectional study used a questionnaire aimed at adults with AD, experiencing symptoms they attribute to TSW. The questionnaire was posted as a link, free to share with others, in a Swedish TSW-themed Facebook group and remained accessible for 4 weeks. Descriptive statistics and topical text analysis on open-ended items were used to present and interpret the results.
The participants (n=82) reported dermatologists (n=41, 50%), general practitioners (n=40, 49%), and practitioners of complementary and alternative medicine (CAM; n=32, 39%) as the most frequent health care contacts for TSW. However, among participants with ongoing symptoms attributed to TSW (n=68), ongoing health care contacts with general practitioners, dermatologists, and practitioners of CAM were reported by only 10% (n=7), 22% (n=15), and 13% (n=11), respectively. For symptoms attributed to AD, the frequencies of health care provider contacts were higher. Almost all participants had sought help from a general practitioner (n=81, 99%) or a dermatologist (n=76, 93%) at some point, and many had also consulted a practitioner of CAM (n=59, 72%). Among those with ongoing symptoms attributed to AD, 43% (n=26) had an ongoing contact with a dermatologist. Participant-requested help and support from health care providers included understanding and confirmation of TSW impairments (n=45, 56%), treatment of symptoms (n=26, 32%), and increased awareness and information about TSW from health care providers (n=21, 26%). The most common TSW information sources were Facebook (n=78, 96%), websites (n=75, 93%), and Instagram (n=45, 56%), but YouTube (n=11, 14%), podcasts (n=7, 10%), and TikTok (n=5, 6%) were also reported.
This study investigates health care utilization patterns related to TSW. The results indicate that the participants received insufficient support from health care providers for symptoms they attributed to TSW. The participants initiated and maintained health care provider contacts for symptoms attributed to AD to a greater extent than for TSW and sought information and support for TSW elsewhere. Targeted interventions to overcome this could be educational efforts for general practitioners and dermatologists about the current scientific knowledge of TSW as well as the TSW discourse on social media. In addition, health care providers need to engage and contribute to evidence-based content about TSW on relevant social media platforms to prevent the spread of misinformation about topical glucocorticoids.
Journal Article
Individual Lymphocyte Sensitivity to Steroids as a Reliable Biomarker for Clinical Outcome after Steroid Withdrawal in Japanese Renal Transplantation
by
Iwamoto, Hitoshi
,
Okihara, Masaaki
,
Kikuchi, Yukiko
in
Biomarkers
,
Clinical medicine
,
Clinical outcomes
2021
Recently, steroid reduction/withdrawal regimens have been attempted to minimize the side effects of steroids in renal transplantation. However, some recipients have experienced an increase/resumption of steroid administrations and acute graft rejection (AR). Therefore, we investigated the relationship between the individual lymphocyte sensitivity to steroids and the clinical outcome after steroid reduction/withdrawal. We cultured peripheral blood mononuclear cells (PBMCs) isolated from 24 recipients with concanavalin A (Con A) in the presence of methylprednisolone (MPSL) or cortisol (COR) for four days, and the 50% of PBMC proliferation (IC50) values and the PBMC sensitivity to steroids were calculated. Regarding the experience of steroid increase/resumption and incidence of AR within one year of steroid reduction/withdrawal, the IC50 values of these drugs before transplantation in the clinical event group were significantly higher than those in the event-free group. The cumulative incidence of steroid increase/resumption and AR in the PBMC high-sensitivity groups to these drugs before transplantation were significantly lower than those in the low-sensitivity groups. These observations suggested that an individual’s lymphocyte sensitivity to steroids could be a reliable biomarker to predict the clinical outcome after steroid reduction/withdrawal and to select the patients whose dose of steroids can be decreased and/or withdrawn after transplantation.
Journal Article
Glucocorticoid Withdrawal Syndrome following treatment of endogenous Cushing Syndrome
by
Findling, James W
,
Auchus, Richard J
,
He, Xin
in
Adrenocorticotropic hormone
,
Cognition
,
Cushing syndrome
2022
Purpose:Literature regarding endogenous Cushing syndrome (CS) largely focuses on the challenges of diagnosis, subtyping, and treatment. The enigmatic phenomenon of glucocorticoid withdrawal syndrome (GWS), due to rapid reduction in cortisol exposure following treatment of CS, is less commonly discussed but also difficult to manage. We highlight the clinical approach to navigating patients from GWS and adrenal insufficiency to full hypothalamic-pituitary-adrenal (HPA) axis recovery.Methods:We review the literature on the pathogenesis of GWS and its clinical presentation. We provide strategies for glucocorticoid dosing and tapering, HPA axis testing, as well as pharmacotherapy and ancillary treatments for GWS symptom management.Results:GWS can be difficult to differentiate from adrenal insufficiency and CS recurrence, which complicates glucocorticoid dosing and tapering regimens. Monitoring for HPA axis recovery requires both clinical and biochemical assessments. The most important intervention is reassurance to patients that GWS symptoms portend a favorable prognosis of sustained remission from CS, and GWS typically resolves as the HPA axis recovers. GWS also occurs during medical management of CS, and gradual dose titration based primarily on symptoms is essential to maintain adherence and to eventually achieve disease control. Myopathy and neurocognitive dysfunction can be chronic complications of CS that do not completely recover.Conclusions:Due to limited data, no guidelines have been developed for management of GWS. Nevertheless, this article provides overarching themes derived from published literature plus expert opinion and experience. Future studies are needed to better understand the pathophysiology of GWS to guide more targeted and optimal treatments.
Journal Article
Optimal functioning of hypothalamic–pituitary–adrenal axis after cessation of prednisolone therapy: a cross-sectional study in children with nephrotic syndrome
by
Mishra, Kirtisudha
,
Sharma, Shikha
,
M., Jaiganesh
in
Adolescent
,
Adrenal glands
,
Adrenocorticotropic Hormone
2025
Background
Hypothalamic–pituitary–adrenal (HPA) axis recovery after cessation of steroid therapy in children with nephrotic syndrome (NS) has hardly been studied in the literature.
Methods
This 22-month cross-sectional study recruited children (2–14 years) with NS, having received a minimum 3 months of prednisolone, now in remission, and off steroids for 1, 3, or 6 months. Serum cortisol-basal and stimulated (with long-acting intramuscular adrenocorticotropic hormone), and factors affecting them, were assessed. Low basal and stimulated cortisol were taken as < 138 nmol/L and < 500 nmol/L, respectively.
Results
Of 80 (60 males) children, median (IQR) age 64 (43, 91.7) months, most were infrequently relapsing (34; 42.5%) or had a single episode of NS (35; 43.8%). As per duration since discontinuation, 23 (28.8%), 35 (43.8%), and 22 (27.4%) children were off steroids for 1, 3, and 6 months, respectively. Overall, 8 (10%) and 26 (32.5%) had low basal and stimulated cortisol levels, respectively. Proportions of children with HPA axis suppression (low peak cortisol) were 9/23 (39%), 12/35 (34%), and 5/22 (23%) in the groups off steroids for 1, 3, and 6 months, respectively. Optimal peak cortisol level, indicating adrenal recovery, was independently associated with duration since cessation of prednisolone [odds ratio (6 months vs. 1 month) was 10.07 (95%CI 1.46 to 69.51);
P
= 0.019] and basal cortisol levels > 138 nmol/L (odds ratio 25.0 (95%CI 2.94 to 200);
P
= 0.03).
Conclusions
Nearly two-thirds of children with mild courses of NS demonstrate optimal HPA axis function between 1 and 6 months post cessation of steroids. Duration since cessation and basal cortisol independently predict optimal adrenal response.
Graphical Abstract
A higher resolution version of the Graphical abstract is available as
Supplementary information
Journal Article
Topical steroid withdrawal: dissecting the controversy
2026
In the past few years, topical steroid withdrawal (TSW) has received increasing recognition from research and regulatory agencies. Delphi protocols have solidified the clinical features and treatment options recognized by clinicians. Pilot studies elucidating the mechanisms of TSW pathology have been performed. Meanwhile, regulatory bodies have updated the topical corticosteroids (TCS) warning labels to include TSW. And yet, the idea that TSW is distinct from the underlying dermopathies which conferred the TCS exposure remains debated by some. This narrative review aims to help providers better understand the origins of, and current state of, the controversy surrounding TSW. We review the history of TSW claims and counter claims, focusing on sources found in the medical literature. Having presented the development of TSW skepticism, we next detail the errors in the three main examples of TSW denial: ignoring the syndromic nature of TSW to focus on skin pathology which overlaps with other dermopathies; systematically devaluing patient-reported symptoms; and circular logic asserting that studies into TSW cannot be conducted without first establishing diagnostic criteria requiring studies to obtain. Finally, we present an updated assessment in the knowledge gaps surrounding TSW. We hope that this report will help providers recognize TSW, especially in contrasting the disorder with the dermopathies which have similar presentations of cutaneous symptoms. Overall, we believe this report will help providers better reassure patients to whom the diagnosis of TSW should not be applied, better council patient on the risks of TCS, and better provide trauma-informed care for patients who with TSW.
Journal Article
Steroid withdrawal after renal transplantation: a retrospective cohort study
2017
Background
Immunosuppressive regimens in renal transplantation frequently contain corticosteroids, but many centers withdraw steroids as a consequence of unwanted side effects of steroids. The optimal timing to withdraw steroids after transplantation, however, remains unclear. The aim of this study was to determine an optimal time point following kidney transplantation that is associated with reduced mortality without jeopardizing the allograft to allow safe discontinuation of steroids.
Methods
We conducted a retrospective cohort study and computed a concatenated landmark-stratified Cox supermodel to estimate hazard ratios and 95% confidence intervals for mortality and graft loss using dynamic propensity score matching to adjust for confounding by indication.
Results
A total of 6070 first kidney transplant recipients in the Austrian Dialysis and Transplant Registry who were transplanted between 1990 and 2012 were evaluated and classified according to steroid treatment status throughout follow-up after kidney transplantation; 2142 patients were withdrawn from steroids during the study period. Overall, 1131 patients lost their graft and 821 patients in the study cohort died. Steroid withdrawal within 18 months after transplantation was associated with an increased rate of graft loss compared to steroid maintenance during that time (6 months after transplantation: HR = 1.8; 95% CI, 1.3 to 2.6; 18 months after transplantation: HR = 1.3; 95% CI, 1.1 to 1.6; 24 months after transplantation: HR = 1.2; 95% CI, 0.9 to 1.5), while mortality was not different between groups.
Conclusions
Our findings suggest that steroid withdrawal after anti-IL-2 induction in the first 18 months after transplantation is associated with an increased risk of allograft loss.
Journal Article
Investigating Topical Steroid Withdrawal Videos on TikTok: Cross-Sectional Analysis of the Top 100 Videos
by
Abou Shahla, William
,
Haddad, Firas
,
Saade, Dana
in
Administration, Topical
,
Adult
,
Cross-Sectional Studies
2024
Social media platforms like TikTok are a very popular source of information, especially for skin diseases. Topical steroid withdrawal (TSW) is a condition that is yet to be fully defined and understood. This did not stop the hashtag #topicalsteroidwithdrawal from amassing more than 600 million views on TikTok. It is of utmost importance to assess the quality and content of TikTok videos on TSW to prevent the spread of misinformation.
This study aims to assess the quality and content of the top 100 videos dedicated to the topic of TSW on TikTok.
This observational study assesses the content and quality of the top 100 videos about TSW on TikTok. A total of 3 independent scoring systems: DISCERN, Journal of the American Medical Association, and Global Quality Scale were used to assess the video quality. The content of the videos was coded by 2 reviewers and analyzed for recurrent themes and topics.
This study found that only 10.0% (n=10) of the videos clearly defined what TSW is. Videos were predominantly posted by White, middle-aged, and female creators. Neither cause nor mechanism of the disease were described in the videos. The symptoms suggested itching, peeling, and dryness which resembled the symptoms of atopic dermatitis. The videos fail to mention important information regarding the use of steroids such as the reason it was initially prescribed, the name of the drug, concentration, mechanism of usage, and method of discontinuation. Management techniques varied from hydration methods approved for treatment of atopic dermatitis to treatment options without scientific evidence. Overall, the videos had immense reach with over 200 million views, 45 million likes, 90,000 comments, and 100,000 shares. Video quality was poor with an average DISCERN score of 1.63 (SD 0.56)/5. Video length, total view count, and views/day were all associated with increased quality, indicating that patients were interacting more with higher quality videos. However, videos were created exclusively by personal accounts, highlighting the absence of dermatologists on the platform to discuss this topic.
The videos posted on TikTok are of low quality and lack pertinent information. The content is varied and not consistent. Health care professionals, including dermatologists and residents in the field, need to be more active on the topic, to spread proper information and prevent an increase in steroid phobia. Health care professionals are encouraged to ride the wave and produce high-quality videos discussing what is known about TSW to avoid the spread of misinformation.
Journal Article
Lipid abnormalities in pediatric kidney transplant recipients on steroid withdrawal maintenance immunosuppression
by
Jiang, Ziou
,
Zangla, Emily
,
Kizilbash, Sarah J.
in
Body mass index
,
Calcineurin
,
Cardiovascular diseases
2024
Background
Dyslipidemia is a modifiable risk factor for cardiovascular disease. The prevalence of dyslipidemia in pKTR (pediatric kidney transplant recipients) under modern immunosuppression remains unknown. We determined the prevalence, risk factors, co-morbidities, and treatment patterns of lipid abnormalities in pediatric kidney transplant recipients on steroid withdrawal immunosuppression.
Methods
pKTR (age ≤ 21 years) at a single center on steroid withdrawal immunosuppression underwent lipid screening between January 1, 2020, and September 30, 2022. Continuous and categorical variables were compared using the Wilcoxon rank-sum and chi-square or Fisher’s exact tests, respectively. The correlation between total cholesterol and BMI (body mass index) was assessed using Pearson’s product–moment correlation, and predictors of lipid abnormalities were evaluated using the multivariable logistic regression.
Results
A total of 96 patients were included, with a median post-transplant time of 2.5 years (IQR: 1.3–5.4). Of the total, 64.6% (
n
= 62) of patients had a fasting lipid abnormality. We found a significant linear correlation between total cholesterol and BMI (
r
= 0.38,
p
= 0.0022). After multivariable adjustment, every 1 ml/min/1.73 m
2
increase in eGFR was associated with a 2% lower odds of a lipid abnormality (OR 0.979,
p
= 0.026). Obesity, hypertension, and left ventricular hypertrophy were similar between those with and without lipid abnormalities, while insulin-treated diabetes was more prevalent in recipients with lipid abnormalities (12.9% vs. 0%,
p
= 0.047). Only 36.5% of patients (
n
= 19) were referred to a dietician and/or lipid specialist; one received statin therapy.
Conclusions
Lipid abnormalities are highly prevalent in pKTR, but therapeutic intervention is infrequent. Calcineurin inhibition without corticosteroids may not be protective; however, higher eGFR is associated with a lower prevalence of lipid abnormalities.
Graphical abstract
A higher resolution version of the Graphical abstract is available as
Supplementary information
Journal Article
Topical steroid withdrawal syndrome in a mother and son: A case report
2023
Topical corticosteroids are first-line treatment for many dermatoses, and are generally considered safe and effective. However, topical steroid withdrawal syndrome can result from use of topical corticosteroids, and this condition is not well-known among physicians. This article reports a mother and son whose presentations of topical steroid withdrawal syndrome following the discontinuation of prolonged, high-potency topical corticosteroid use were nearly identical. This report adds to the growing body of evidence that topical steroid withdrawal syndrome is its own entity, rather than an exacerbation of the underlying dermatosis, and adds to the few pediatric reports of topical steroid withdrawal syndrome. Management for both patients involved topical corticosteroid discontinuation; however, it took approximately 2 years before the majority of their topical steroid withdrawal syndrome manifestations resolved. Increased awareness surrounding this condition is essential to facilitate topical steroid withdrawal syndrome prevention and diagnosis and to decrease topical corticosteroid phobia and increase patient–physician trust.
Journal Article
Possible Treatment of Topical Steroid Withdrawal with Methylene Blue Case Report: Implications for Mitochondrial Pathology
by
Osei-Karikari, Kingsley
,
Myles, Ian A.
,
Jordan, Jalin
in
Antibiotics
,
Case reports
,
Dermatitis
2025
AbstractIntroduction: Recent observations have demonstrated that topical steroid withdrawal (TSW) is an induced, but targetable, defect in mitochondrial complex I function that warrants further investigation. Case Presentation: An 8-year-old girl with atopic dermatitis (AD) was treated with topical corticosteroids (TCSs), including high-potency agents. Her initial symptoms were limited to the chest and back. After approximately 3 months of treatment with escalating potency, the perceived lack of TCS efficacy prompted her parents to discontinue TCS while maintaining emollients. Four weeks later, the patient developed new symptoms consistent with TSW involving the face, neck, and legs. The family attempted alternative-medical treatments including turmeric, vitamin D3, and more without clinical response, before observing symptomatic relief with a self-initiated, low dose of methylene blue (MB). Conclusion: Although the merits of the case are anecdotal, existing literature suggests that TSW is associated with mitochondrial complex I dysfunction, which could explain the observed clinical benefit. Given that both TSW and AD have natural temporal variations, we cannot extrapolate conclusively based on a single report. However, at minimum, providers should be aware of the TSW patient community’s consideration of MB as an alternative therapy, especially given the lack of data on long-term safety.
Journal Article