Complementary and Alternative Medicine for Hidradenitis Suppurativa Discussed on TikTok: A Cross-Sectional Analysis.

BACKGROUND: Hidradenitis suppurativa (HS) is a painful, chronic inflammatory skin disease that negatively affects patient quality of life, and conventional treatments are variably effective. As a result, patients often turn to complementary and alternative medicine (CAM) for pain relief. Social media enables HS patients to share treatment recommendations. TikTok is a popular social media platform, but little is known about the HS treatments discussed in TikTok videos.  Objective: To evaluate the content and quality of information on TikTok regarding CAM HS therapies.  Methods: A cross-sectional analysis was conducted by performing a search in TikTok using the terms #hidradenitissuppurativa, #hswarrior, #naturalremedy, #complementarymedicine, #alternativemedicine, and #HStreatment. Two independent reviewers evaluated video quality using the DISCERN and AVA instruments. Linear regressions compared the engagement, DISCERN, and AVA scores among different uploader types. RESULTS: In total, 91 TikTok videos were analyzed. Videos were uploaded by non-physicians (82.4), dermatologists (6.6%), and private companies (11.0%). The average DISCERN and AVA scores were 36.2 and 1.6, respectively (poor quality). Common CAM therapies were natural salves, turmeric, Epsom salts, elimination diets, and zinc supplements. Physician-uploaded videos were of significantly higher quality than videos by other uploader types, with an average DISCERN and AVA score of 44.3 (P<0.009) and 2.6 (P<0.001), respectively (fair quality). CONCLUSION: TikTok videos were poor quality (low DISCERN and AVA scores); physician-uploaded videos were fair quality. Dermatologists can improve video quality by adequately discussing the supporting evidence, mechanisms of action, and remaining questions for HS treatments.  J Drugs Dermatol. 2024;23(3):e93-96. doi:10.36849/JDD.7738e.

Hidradenitis suppurativa: a new, principle-centered paradigm for managing a dynamic disease.

Hidradenitis suppurativa (HS) is a chronic, debilitating skin condition that disproportionately affects socioeconomically underserved patients. Currently, treatment outcomes for patients with HS remain poor, largely because of a deficiency in current guidelines on exactly how and when to employ the myriad treatment tools, resulting in heterogeneous care models and confusion. Aggressive medical therapy is often started too late, pursued for too long whilst delaying procedural intervention, or skipped over altogether for procedures. Here, we propose a new, principle-centered management paradigm for HS that emphasizes the need for prompt intervention to minimize suffering and an understanding of how sinus tract development dictates the timing of medical and procedural interventions.

Evaluating dietary considerations in hidradenitis suppurativa: a critical examination of existing knowledge.

Hidradenitis suppurativa (HS) is a chronic condition that can overwhelm patients, and the effectiveness of supplementary dietary treatments remains uncertain. The primary aim of this review is to explore the connection between diet and HS progression. However, it is imperative to note that the evidence supporting a substantial role of the diet in HS remains weak. Dietary alterations alone should not be considered independent solutions for managing HS. Medical therapy continues to be indispensable for adequate treatment. Research indicates that the Mediterranean lifestyle and diet may provide cost-effective and beneficial adjustments when combined with traditional therapies. Conversely, foods with a high glycemic index and dairy could worsen HS symptoms, conceivably through mechanisms linked to insulin resistance and inflammation. Zinc, known for its antioxidant properties, shows promise as an adjunct therapy. Moreover, evidence suggests a connection between vitamin D deficiency and HS severity, although the findings are inconclusive. Brewer's yeast-free diet, B12 supplementation, intermittent fasting, and reducing the intake of refined sugar and dairy merit further investigation. In conclusion, this review highlights the need for additional research because of the lack of standardized reporting of clinical effects in the studies under scrutiny. A deeper exploration of the pathophysiology focusing on dietary modifications and their potential associations with HS severity is essential. Furthermore, it is crucial to recognize that patients' willingness to experiment with new diets makes them vulnerable to fraudulent interventions, highlighting the importance of evidence-based dietary guidance.

Off-Label Use of Janus Kinase Inhibitors in Inflammatory Cutaneous Diseases.

Dysregulation of Janus kinase (JAK) pathways from uncontrolled cytokine signaling comprises the pathological basis for many complex inflammatory cutaneous disorders. Oral JAK inhibitors, upadacitinib, tofacitinib, and baricitinib targeting JAK 1 and JAK 1/3, respectively, are currently US Food and Drug Administration (FDA)-approved for several rheumatic conditions. However, studies have shown that JAK-mediated signaling pathways are involved in many immune-related dermatologic conditions. As a result, for recalcitrant diseases, JAK inhibitors are potential alternative therapies due to their broad targeted inhibitory mechanisms. In this case series, we present the successful off-label treatment of 6 cases across dermatomyositis, hidradenitis suppurativa, cutaneous lupus, and cutaneous Crohn’s disease, which failed conventional therapies with upadacitinib or tofacitinib. In the 3 dermatomyositis cases, use of upadacitinib or tofacitinib demonstrated positive clinical outcomes, with no recurrent symptoms in cases where upadacitinib was used. In treatment-resistant hidradenitis suppurativa, upadacitinib demonstrated reduced systemic flares and moderate cutaneous symptom improvement. In the case of cutaneous Crohn’s disease, upadacitinib resulted in reduced cutaneous symptoms without new flares. Tofacitinib resulted in completed resolution of cutaneous symptoms in our patient’s case of cutaneous lupus erythematosus. JAK inhibitors upadacitinib and tofacitinib may be potential drug candidates in patients with treatment-resistant disease, especially in cases of inflammatory cutaneous conditions such as dermatomyositis, hidradenitis suppurativa, cutaneous lupus, and cutaneous Crohn’s disease. Further studies with larger sample sizes among these conditions are warranted to assess potential broader applicability of the positive results demonstrated in our patient cases. J Drugs Dermatol. 2023;22(12):1183-1190. doi:10.36849/JDD.7500.

Shorter time to initiation of biologic therapy in the setting of a hidradenitis suppurativa specialty clinic.

Hidradenitis suppurativa (HS) is a chronic condition with a significant psychological and physical burden but a paucity of effective treatments. Early intervention with adalimumab improves disease outcomes. Two previous studies in Denmark and Northern Ireland have identified a time of 8.2 and 2.9 years, respectively, from first HS systemic/dermatology consultation to commencing a biologic. We aimed to evaluate the time from disease onset and from first specialty HS clinic review to the initiation of biologic therapy. We retrospectively reviewed 34 patients on biologic treatment for HS. The mean diagnostic delay was 12.4 years. The mean time from disease onset to biologic initiation was 14.8 years. Prior to a biologic, patients received a median of 3.3 treatments from the specialty HS clinic. The median time to biologic from first presentation at the specialty HS clinic was 1 year. This is shorter than the therapeutic delay reported in dermatology clinics in Denmark and Northern Ireland, providing evidence on the importance of specialized HS treatment. However, to make an impact with specialized HS care and earlier biologic initiation, diagnostic delay needs to be reduced.

[Guidelines for the Management of Patients with Hidradenitis Suppurativa]. / Recomendações na Abordagem do Doente com Hidradenite Supurativa.

Hidradenitis suppurativa is a chronic and recurrent inflammatory dermatosis characterized by the presence of inflammatory nodules and abscesses in the apocrine gland-rich areas that may progress to suppurative fistulas and scars. Despite being considered one of the dermatological conditions with the greatest impact on patient quality of life, it is often underdiagnosed. Hidradenitis suppurativa, especially in its severe forms, is associated with numerous comorbidities, so a holistic and multidisciplinary perspective is crucial for the management of these patients. The therapeutic approach is complex and challenging. The medical treatment options are diverse and must be adapted to clinical presentation and disease severity. Surgical therapy should be considered as an adjuvant to medical treatment, particularly in refractory cases and in the presence of scars or anatomical and/or functional mutilation. These recommendations reflect the main aspects of the management of the patient with hidradenitis suppurativa and are addressed to all healthcare professionals who take part in their follow-up.

A hidradenite supurativa é uma dermatose inflamatória crónica e recorrente que se caracteriza pela presença de nódulos inflamatórios e abcessos nas áreas ricas em glândulas apócrinas, que podem evoluir para fístulas supurativas e cicatrizes. Apesar de ser considerada uma das patologias dermatológicas com maior impacto na qualidade de vida dos doentes, é frequentemente subdiagnosticada. A hidradenite supurativa, sobretudo nas suas formas mais graves, associa-se a diversas comorbilidades, pelo que é fundamental adotar uma perspetiva holística e multidisciplinar na gestão destes doentes. A abordagem terapêutica é complexa e desafiante. A terapêutica médica é multifacetada e deve ser adaptada à apresentação clínica e gravidade da doença. A terapêutica cirúrgica deverá ser equacionada como adjuvante à terapêutica médica, em particular nos casos refratários e perante cicatrizes ou mutilação anatómica e/ou funcional. As presentes recomendações pretendem reunir os principais aspetos da abordagem ao doente com hidradenite supurativa e destinam-se a todos os profissionais de saúde envolvidos no seu acompanhamento.

Positive Predictive Value of Diagnosis Codes for Hidradenitis Suppurativa and Cutaneous Abscess.

BACKGROUND: Requisite to the application of clinical databases for observational research in hidradenitis suppurativa (HS) is the identification of an accurate case cohort. There is limited information on the validity of using diagnosis codes to identify HS and cutaneous abscess (CA) case cohorts. OBJECTIVES: The objective of the study was to assess the validity in utilizing diagnosis codes to establish the HS and CA cohorts from an integrated health system clinical database. METHODS: In this retrospective study, we evaluated a case-finding algorithm for HS which included the presence of at least one diagnosis code for HS and no diagnosis codes for CA of the axilla, groin, perineum, or buttock at any time. We evaluated a case-finding algorithm for CA which included the presence of at least one diagnosis code for abscess in the axilla, groin, perineum, or buttock and no codes for HS at any time. Medical records for a random sample of 100 patients meeting algorithm criteria were reviewed and adjudicated by dermatologists for accuracy of diagnosis. The positive predictive values (PPVs) of the ICD code-based case definitions were calculated, using the dermatologist's chart-based adjudication as the reference standard. RESULTS: Among 100 HS patients, median age (interquartile range) in the HS cohort was 33 (24.75, 43.25) years. HS patients were predominantly female (82%) and white (70%). Median age among 100 CA patients was 31.5 (95% CI 6.75, 47.25) years. The majority of CA patients were female (56%) and white (69%). The PPVs of the ICD-based case-finding algorithms for HS and CA were 88% (95% CI 81.6-94.4%) and 75.0% (95% CI 66.5-83.5%), respectively. CONCLUSION: The case-finding algorithms employing at least one diagnosis code for HS and CA of the axilla, groin, perineum, or buttock, with the exclusion of the other's diagnosis codes, has good to strong PPV and may provide balance in achieving accuracy and adequate power for cohorts identified within clinical databases.

Holistic health record for Hidradenitis suppurativa patients.

Hidradenitis suppurativa (HS) is a recurrent inflammatory skin disease with a complex etiopathogenesis whose treatment poses a challenge in the clinical practice. Here, we present a novel integrated pipeline produced by the European consortium BATMAN (Biomolecular Analysis for Tailored Medicine in Acne iNversa) aimed at investigating the molecular pathways involved in HS by developing new diagnosis algorithms and building cellular models to pave the way for personalized treatments. The objectives of our european Consortium are the following: (1) identify genetic variants and alterations in biological pathways associated with HS susceptibility, severity and response to treatment; (2) design in vitro two-dimensional epithelial cell and tri-dimensional skin models to unravel the HS molecular mechanisms; and (3) produce holistic health records HHR to complement medical observations by developing a smartphone application to monitor patients remotely. Dermatologists, geneticists, immunologists, molecular cell biologists, and computer science experts constitute the BATMAN consortium. Using a highly integrated approach, the BATMAN international team will identify novel biomarkers for HS diagnosis and generate new biological and technological tools to be used by the clinical community to assess HS severity, choose the most suitable therapy and follow the outcome.

Hidradenitis Suppurativa International Online Community: Patient Characteristics and a Novel Model of Treatment Effectiveness.

Treatment for hidradenitis suppurativa is diverse, yet frequently unsatisfactory. The aims of this study were to create a reproducible artificial intelligence-based patient-reported outcome platform for evaluation of the clinical characteristics and comorbidities of patients with hidradenitis suppurativa, and to use this to grade treatment effectiveness. A retrospective patient- reported outcome study was conducted, based on online questionnaires completed by English-speaking patients registered to the hidradenitis suppurativa StuffThatWorks® online community. Data collected included patient characteristics, comorbidities and treatment satisfaction. These were recoded into scalable labels using a combination of machine learning algorithm, manual coding and validation. A model of treatment effectiveness was generated. The cohort included 1,050 patients of mean ± standard deviation age 34.3 ± 10.3 years. Greater severity of hidradenitis suppurativa was associated with younger age at onset (p < 0.001) and male sex (p < 0.001). The most frequent comorbidities were depression (30%), anxiety (26.4%), and polycystic ovary syndrome (16.6%). Hurley stage I patients rated topical agents, dietary changes, turmeric, and pain relief measures more effective than tetracyclines. For Hurley stage II, adalimumab was rated most effective. For Hurley stage III, adalimumab, other biologic agents, systemic steroids, and surgical treatment were rated more effective than tetracyclines. Patients with hidradenitis suppurativa often have comorbid psychiatric and endocrine diseases. This model of treatment effectiveness provides a direct comparison of standard and complementary options.

The Bacteriology of Skin Lesions in Patients with Hidradenitis Suppurativa Is Associated with Previous Antibiotic Treatment in the Community Setting: A Referral Center Experience.

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic skin disease characterized by inflammatory nodules and abscesses. The pathogenic role of bacteria is not fully understood. As the diagnosis is usually delayed, patients are often treated with several lines of antibiotics in a nonstandardized fashion. The aim of the study was to investigate and compare the bacteriology of active HS lesions in patients treated or not treated with antibiotics in the community setting before referral to a dedicated HS clinic. METHODS: Purulent skin lesions of patients with HS referred to the HS Clinic of Rabin Medical Center in 2009-2020 were cultured. Data were collected from the patients' medical files and microbiology reports. The correlation between the location of the skin lesion and the bacteriologic profile was analyzed, and the effects of previous antibiotic treatment on the bacteriologic profile of the lesions and susceptibility patterns of the cultured bacteria were evaluated. RESULTS: Pus (or tissue) from inflammatory lesions of 97 patients with HS was cultured. Mean (SD) patient age was 39.5 (13.0) years, and mean delay in diagnosis was 7.3 (8.3) years. Most patients (57.7%) had dominant involvement of one location, with the most active lesions concentrated in the genitalia, gluteal/perineal area, and axilla. Enterobacterales species were the most frequent isolates detected in all locations except the face and scalp. Seventy-eight patients (80.4%) had been treated in the community setting prior to referral with a median (range) of 2 (1-8) lines of antibiotics. The most commonly prescribed antibiotics were amoxicillin/clavulanate (22.0%), doxycycline/minocycline (16.8%), clindamycin (16.2%; monotherapy 8.1%, clindamycin with rifampicin 8.1%), and cephalexin (13.9%). Compared to the previously untreated patients, cultures of lesions from the previously treated patients yielded a higher percentage of gram-negative Enterobacterales (the most common isolates in this group) (31.3% vs. 10.3%) and a significantly higher median number of isolates per culture (2 vs. 1, p < 0.0001). Gram-positive bacteria, usually considered contaminants (mainly coagulase-negative staphylococci) accounted for 31.0% of the isolates in the previously treated group. Susceptibility testing for the entire cohort revealed 100% bacterial sensitivity to ciprofloxacin. Staphylococcus spp. were 100% sensitive to rifampicin. Both gram-positive and gram-negative bacteria had high sensitivity to trimethoprim and sulfamethoxazole. CONCLUSION: Nonstandardized antibiotic treatment of HS in the community setting can skew the microbiology of skin lesions toward gram-negative bacteria. Therefore, treatment with trimethoprim and sulfamethoxazole or ciprofloxacin, either alone or combined with rifampicin, may be considered.

A Comparison of Alternative Medicine Users and Non-Users in Patients With Hidradenitis Suppurativa.

BACKGROUND: Hidradenitis suppurativa patients often seek non-prescription therapies. OBJECTIVE: To determine the prevalence of alternative medicine use and characterize the differences between patients who report using alternative medications versus those who do not. METHODS: We surveyed 67 patients with hidradenitis suppurativa regarding demographics, alternative medicine use, disease severity, and quality of life. RESULTS: 25 (37.2%) of the HS subjects reported alternative medicine use. Alternative medicine users tended to be younger (36.7 vs 40.8 years), have a shorter time since diagnosis (12.6 vs14.6 years), and reported worse quality of life (14.1 vs 11.0) than non-users. These differences were not statistically significant. LIMITATIONS: Limitations included a small sample size. CONCLUSION: Alternative medicine use among patients with hidradenitis is common regardless of disease severity; even mild disease may drive patients to seek alternative treatment. J Drugs Dermatol. 2021;20(10):1072-1074. doi:10.36849/JDD.6046.

Physician perspectives on complementary and alternative medicine in hidradenitis suppurativa.

Hidradenitis suppurativa (HS) is a chronic and often debilitating inflammatory condition characterized by frequent nodules, abscesses, sinus tracts, and scars impacting the intertriginous areas. Many patients with HS often report limited treatment success and symptom coverage with conventional therapies. Recent studies have reported the widespread use of complementary and alternative medicine (CAM) among patients with HS. In this study, our aim was to examine current physician practice patterns, opinions, and comfort with recommending CAM. Our results indicate that provider comfort and opinions on CAM varied based on the provider's experiences, demographics, and the CAM modality itself. Overall, nearly two-thirds (n = 30, 61.2%) of respondents agreed that CAM and conventional medicine were more effective together than either alone. Meanwhile, 44.9% (n = 22) of respondents routinely recommend CAM while 64.6% (n = 31) of respondents reported that they are routinely asked about CAM. The majority (n = 41, 83.7%) of respondents indicated a lack of scientific evidence in the medical literature as a barrier to recommending CAM along with efficacy concerns (n = 34, 69.4%) and ability to recommend reputable CAM products (n = 32, 65.3%) and practitioners (n = 32, 65.3%). Future investigations are warranted to establish a better understanding of the efficacy and benefit of CAM methods in conjunction with conventional methods.

[Anakinra therapy in a patient with multifocal pyoderma gangrenosum and hidradenitis suppurativa]. / Anakinra-Therapie eines multifokalen Pyoderma gangraenosum bei einem Patienten mit Hidradenitis suppurativa.

The case of a patient with pyoderma gangrenosum and exacerbation after an intense massage is reported. After different immunosuppressive therapies and former diagnosis of hidradenitis suppurativa in his medical history the patient underwent therapy with anakinra 100 mg per day and showed good improvement of his ulcers.

Real life data on the biopsychosocial effects of Adalimumab in the management of hidradenitis suppurativa: A multicenter cross sectional analysis and consideration of a multisystem monitoring approach to follow up.

Hidradenitis suppurativa (HS) is a chronic relapsing, remitting disease which results in the formation of inflammatory nodules and pustules in intertriginous areas. HS is a complex disease with known psychosocial impact. Adalimumab is a biologic, used for treatment resistant HS, which working by inactivating TNF-alpha. Our primary objective was to determine the effects of adalimumab on HS-PGA and DLQI scores in patients with HS that had been on the treatment for at least 6 months. Our secondary objective was to note and assess the significance of adverse effects and impacts on wider health, namely occupational and social. A retrospective cross-sectional study was performed using clinic notes from routine follow ups in biologic clinics in three specialist HS centers. About 77% (n = 78/101) patients demonstrated improvements in their HS-PGA scores. Significant improvements in the DLQI scores of the patient cohort (P = .0001, 95% CI -12.8 to -5.9) have also been demonstrated. A total of 31.7% (32/101) patients experienced adverse effects spanning multiple organ systems, with 27.7% (28/101) requiring treatment cessation. Three of these patients stopped due to the worsening of preexisting mental health symptoms. Adalimumab is effective in reducing HS-PGA and DLQI scores, but patients still complain of systemic effects necessitating drug cessation in some instances. A holistic and multisystemic approach to follow up is required, and there is scope for further studies examining temporal causality in the context of adalimumab and its multisystemic physical and psychological effects.

Biologic Therapy for Hidradenitis Suppurativa Plus Conglobate Acne Associated with SAPHO Syndrome: A Case Report.

is missing (Short Communication).

The most recent advances in understanding and managing hidradenitis suppurativa.

Hidradenitis suppurativa (HS) is a chronic, inflammatory, recurrent, and debilitating skin disease of the hair follicle unit that typically develops after puberty. HS has a significant negative impact on both the quality of life (QOL) of patients affected by this disease as well as family members and caregivers. However, the pathogenesis of HS is multifactorial and still remains to be fully elucidated, which makes the development of treatments difficult. The last 10 years have seen a surge in HS research, and many new findings have come to light, yet much more remains to be elucidated. Physicians must employ a multidisciplinary approach to maximally address all facets of HS. Clinical characteristics of the disease that differ between females and males as well as across different races and ethnic groups must be considered. Targeted topical, oral, and injectable therapies continue to be developed for HS as a greater understanding of the pathogenesis is reached. However, randomized controlled trials regarding dietary factors that may contribute to HS are needed to meet our patients' growing concerns and questions about the role of diet in HS pathogenesis. Finally, improved outcome measures are needed to standardize HS severity and grading between physicians and clinical trials, and a more diverse representation of HS populations is needed in clinical trials.

Altered keratinization and vitamin D metabolism may be key pathogenetic pathways in syndromic hidradenitis suppurativa: a novel whole exome sequencing approach.

BACKGROUND: Diagnosis of pyoderma gangrenosum, acne and hidradenitis suppurativa (PASH) and pyogenic arthritis, pyoderma gangrenosum, acne, and hidradenitis suppurativa (PAPASH) patients, in spite of recently identified genetic variations, is just clinical, since most patients do not share the same mutations, and the mutations themselves are not informative of the biological pathways commonly disrupted in these patients. OBJECTIVE: To reveal genetic changes more closely related to PASH and PAPASH etiopathogenesis, identifying novel common pathways involved in these diseases. METHODS: Cohort study on PASH (n = 4) and PAPASH (n = 1) patients conducted using whole exome sequencing (WES) approach and a novel bioinformatic pipeline aimed at discovering potentially candidate genes selected from density mutations and involved in pathways relevant to the disease. RESULTS: WES results showed that patients presented 90 genes carrying mutations with deleterious and/or damage impact: 12 genes were in common among the 5 patients and bared 237 ns ExonVar (54 and 183 in homozygosis and heterozygosis, respectively). In the pathway enrichment analysis, only 10 genes were included, allowing us to retrieve 4 pathways shared by all patients: (1) Vitamin D metabolism, (2) keratinization, (3) formation of the cornified envelope and (4) steroid metabolism. Interestingly, all patients had vitamin D levels lower than normal, with a mean value of 10 ng/mL. CONCLUSION: Our findings, through a novel strategy for analysing the genetic background of syndromic HS patients, suggested that vitamin D metabolism dysfunctions seem to be crucial in PASH and PAPASH pathogenesis. Based on low vitamin D serum levels, its supplementation is envisaged.

Recognition, diagnosis, and treatment of hidradenitis suppurativa.

Hidradenitis suppurativa is a chronic skin condition characterized by recurrent painful abscesses usually limited to the intertriginous areas. Global prevalence has been estimated at up to 4% of the population. The exact pathogenesis of hidradenitis suppurativa is yet to be elucidated; however, recent research has shown that the disease occurs under the influence of multiple genetic, environmental, and lifestyle factors. Repeated insults result in sinus tract formation and disfigurement, which can have a significant psychosocial effect on patients. A wide range of treatments are available but none are curative. A combination antibiotic regimen is considered first line, and research into the use of biologics has been promising. Early recognition and treatment is paramount to achieving a better prognosis and improving patient quality of life.