Cracking the Code of Chronic Spontaneous Urticaria: Evolving Care by Allergists and Dermatologists | Dermatology Times

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When seeing a patient with suspected chronic spontaneous urticaria (CSU) for the first time, it’s often been months or even years since their search for a diagnosis began.1 Characterized by recurrent hives, angioedema, or both for more than 6 weeks without a known cause, the journey toward CSU diagnosis and relief is often fraught with frustration due to lack of consistent adherence with diagnostic and treatment guidelines, and a relative lack of collaboration in decision-making between providers and patients.2 Based on the current landscape, it’s increasingly important for allergists and dermatologists to align on an effective approach based on the best and latest evidence.

In CSU, the unpredictable presentation of flare-ups can be challenging for health care providers (HCPs) and patients, as it can lead to delays in achieving the goals of management. It’s common for patients to face wait times of a month or longer to see a clinician, and therefore, they may not present with symptoms during their appointment.3 This reality can be debilitating for patients, who face a significant negative impact on their sleep, mental health, and work when their CSU flares up again.4,5 More so, even the type of HCP patients see first can have an impact on their diagnosis and treatment journey, given differences in familiarity with the disease. HCPs may try to identify the cause of CSU by extensive laboratory testing, including suspected allergic triggers, but their efforts are ultimately futile,as an allergic cause is rarely found in further testing, and no test can definitively diagnose the condition.6-8

It’s critical for allergists and dermatologists, who often serve as the primary HCPs for patients with CSU, to disrupt care challenges in a disease as heterogeneous and common as CSU, affecting approximately 1.7 million people in the US.9-11 This starts with a better understanding of clinical pathways for diagnosis and treatment, ensuring each step in the care continuum is rooted in evidence-based practice.

Overcoming Barriers to Diagnosis: Observations from a Dermatologist

  1. Beyond the lack of definitive clinical testing, one of the most critical barriers impacting the diagnosis of CSU is the lack of adherence to guideline recommendations.12,13 For dermatologists and allergists, this can lead to deviations in care, especially disagreement on the need for certain diagnostic tests.
  2. It’s established that CSU diagnosis relies primarily on a comprehensive medical history and physical examination, which is the approach recommended in allergy and immunology guidelines.14-16 Yet, some HCPs often conduct extensive laboratory tests when diagnosing CSU.5,17 A particularly pervasive misconception is the attribution of urticaria and angioedema symptoms to food allergies, which, while commonly suspected by patients, are rarely confirmed in CSU.14,15,18

Evolving Understanding around CSU Pathogenesis

IgE and IgG autoantibodies are thought to play a key role in CSU pathogenesis, contributing to the activation of mast cells that lead to the release of histamine and other inflammatory mediators, which can lead to symptoms.19,20 There is emerging evidence showing other pathways are also involved in disease pathogenesis, including the Bruton’s tyrosine kinase (BTK) pathway, which plays a pivotal role in immune cell activation.

In CSU, BTK signals the release of histamine and other pro-inflammatory mediators from mast cells and is a central pathway across both type I (autoallergic) and type IIb CSU (autoimmune) endotypes, driven by IgE and IgG autoantibodies, respectively.21,22

Challenges with Current Care

Treatment of CSU has long been mired by significant unmet needs, where many patients remain symptomatic.23 Approximately 50% of patients do not achieve complete control of their symptoms with first-line, second-generation antihistamines alone, and require additional management.24 While there are currently approved biologic medications available for those unresponsive to antihistamines, one 2022 study showed the majority of eligible patients are not escalated to advanced therapies.25

The impact of uncontrolled CSU is substantial, not infrequently leading patients on a cycle of urgent care and emergency department visits, corticosteroid prescriptions, and increasing healthcare costs.10 

Empowering Shared Decision-Making 

In this context, shared decision-making is essential in CSU. To better support patients with this condition, many of whom report frustration around diagnosis and care,26 it is important for both allergists and dermatologists to improve their understanding of the disease and evolving therapeutic landscape, ensuring patients know their options. By collaborating with patients to assess symptom management with antihistamines and weigh benefits, risks, and personal preferences regarding advanced therapies, HCPs can help increase patient satisfaction and improve health care outcomes.27

Listening to patients, showing empathy, and communicating clearly based on evidence-based testing will become increasingly important as the healthcare landscape develops. Fostering honest conversations on treatment preferences and expectations will be key to helping patients find the treatment option that fits their preferences, especially for those with poorly controlled disease and other unmet needs

By deepening understanding of CSU among patients and HCPs across the care continuum, we can move beyond common misconceptions and symptom-focused care and instead offer patients treatment options based on shared decision-making.

David M. Lang, MD, FAAAI, FACAAI, FACP, is the emeritus chair of the department of allergy and clinical immunology at Cleveland Clinic and emeritus professor at Cleveland Clinic Lerner College of Medicine at Case Western Reserve University in Cleveland, Ohio.

Naiem Issa, MD, PhD, FAAD, is the director of clinical trials & research at Forefront Dermatology, Clinical assistant professor at the George Washington University School of Medicine and Health Sciences in Washington, DC, and assistant professor at the University of Miami Leonard M. Miller School of Medicine in Miami, Florida.

References

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  3. Jaklevic MC. In the U.S., wait times to see a doctor can be agonizingly long. Association of Health Care Journalists. August 7, 2024. Accessed July 2, 2025. https://healthjournalism.org/blog/2024/08/in-the-u-s-wait-times-to-see-a-doctor-can-be-agonizingly-long/
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