Patients With Chronic Spontaneous Urticaria Seek Better Treatment Beyond Current Options

Patients with chronic spontaneous urticaria experience inadequate symptom control and significant emotional burdens despite various treatment approaches, highlighting an urgent need for more effective and sustained therapies to improve their quality of life. | Image Credit: iam - stock.adobe.com

Despite common strategies like H1-antihistamine switching and up-dosing, most patients (84%) with chronic spontaneous urticaria (CSU) still experience uncontrolled symptoms, indicating a significant need for more effective and sustained treatment options beyond current approaches, according to a study published in Dermatology and Therapy.1

Approximately 20% of people will experience urticaria, or hives, at some point in their lives, appearing as swollen, itchy, and often painful raised welts on the skin.2 While various factors can trigger hives, including allergies, chronic urticaria is characterized by frequent, mast cell-driven hives lasting over 6 weeks. When no external cause can be identified, the condition is specifically diagnosed as CSU.

The main aim in treating CSU is to achieve total symptom control, meaning a perfect Urticaria Activity Score over 7 days (UAS7) of 0.3 This score signifies the complete absence of hives, itching, and swelling, which provides physical relief and significantly boosts patients' mental well-being and quality of life (QOL).

Current treatment guidelines start with second-generation H1-antihistamines, escalating the dose up to fourfold if symptoms persist. When patients still experience symptoms, the next step is typically omalizumab, an anti-IgE biologic. For the most stubborn cases, the immunosuppressant cyclosporine is considered, but it carries substantial adverse effects. Despite this structured approach, many patients do not achieve full symptom control, underscoring the pressing need for novel, more targeted therapies.

A global online survey gathered data from 1127 patients across 7 countries from February to September 2022 (US, Canada, United Kingdom, Germany, France, Italy, and Japan), with 582 diagnosed with CSU.1 Most patients were women (62%) with an average age of 42.2 years.

Over a third (36.4%) also reported chronic inducible urticaria (CIndU). Notably, 68% of patients with CSU had comorbidities, with more than half of those (54%) reporting 2 or more. The most common comorbidities were migraine (21%), anxiety (20%), and sleep disturbance (20%). Nearly half (49%) of patients perceived their disease as moderate, while 29% considered it severe to very severe.

Inadequate Control Despite Varied Treatment Approaches

The survey found that patients were on an average of 2.9 concurrent therapies, with the majority (79%) using H1-antihistamines (H1-AH). Among those on H1-AH, 42% used first-generation and 52% used second-generation versions. Over their 6.3 years of treatment, 80% of patients had switched H1-AHs an average of 2.3 times, and 62% of these individuals had updosed their H1-AHs an average of 2.9 times. Updosing offered little to no relief for 75% of patients and led to adverse effects like increased drowsiness (46%) and other new symptoms (11%). Geographically, H1-AH switching was common in Germany (88%, 2.5 times) and Japan (70%, 2.2 times), while updosing was reported by 74% in the UK (2.1 times) and 42% in Japan (0.9 times).

Despite these treatment efforts, 89% of patients had inadequately controlled disease, regardless of glucocorticoid use. Half of the patients reported current glucocorticoid use (72.1% cream, 48.3% oral, 25.5% injection), and 33% were on biologics (omalizumab, 26%; dupilumab, 16%) or other therapies such as montelukast (18%), doxepin (16%), or ciclosporin (16%). Even with available treatments, most patients reported poorly controlled symptoms.

Among those on biologics, 83% had well-controlled disease (omalizumab, 80%; dupilumab, 94%), while those on montelukast, doxepin, and ciclosporin showed similarly high rates of control at 89%, 94%, and 93%, respectively.

Use of Complementary Health Services

Beyond prescribed treatments, many patients sought additional health services to manage their CSU symptoms. This included dietetic consultations (21%), psychological support (19%), homeopathy (19%), meditation (18%), sleep clinic visits (15%), and acupuncture (13%). Germany reported higher rates of using these services, while Japan reported lower usage.

Patients also commonly engaged in self-care practices, such as using soothing creams (51%), avoiding certain clothing (47%) and foods (39%), and taking vitamins and antioxidant supplements (45%).

The Emotional Toll of Uncontrolled CSU

Living with CSU takes a significant emotional toll, even for those undergoing treatment. Nearly 4 out of 10 patients (37%) reported stress due to the unpredictable nature of their condition, and close to a third (29%) expressed a desperate desire for symptom relief. For individuals with inadequately controlled CSU, the burden extended to frequent feelings of anxiety (31%), moodiness (29%), and feeling unattractive (28%).

Unmet Needs and High Hopes for CSU Treatment

Most patients (65%) weren't satisfied with their current treatment, reporting inadequate control of their CSU symptoms over the past month. The main reason for this dissatisfaction was that treatments only offered partial relief, a sentiment shared by 73% of those with poorly controlled disease and even 40% of those whose disease was considered adequately controlled. Patients primarily hoped for complete freedom from itch and hives, alongside improved symptom control, a better QOL, and long-term remission.

It's crucial to recognize the limitations of online surveys, which can introduce biases due to factors like internet access restrictions and the inherent selection bias in recruiting a cohort that may be more challenging to treat. Additionally, participant responses are subject to recollection bias because they rely on personal perceptions and memories, and the separate recruitment of physicians and patients in the Urticaria Voices study means the physicians did not necessarily treat the surveyed patient population.

“By addressing the treatment gaps and controlling symptoms, the disease burden and HRQOL can be improved, potentially leading to long-term remission for patients with CSU,” study authors concluded.

References

1. Bernstein JA, Winders TA, McCarthy J, et al. Urticaria voices: real-world treatment patterns and outcomes in chronic spontaneous urticaria. Dermatol Ther. Published online June 22, 2025. doi:10.1007/s13555-025-01461-8
2. Santoro C. Significant disease burden and management issues in chronic spontaneous urticaria. The American Journal of Managed Care®. April 15, 2025. Accessed July 28, 2025. https://www.ajmc.com/view/significant-disease-burden-and-management-issues-in-chronic-spontaneous-urticaria
3. Smiley K, Galli L, Geng B. Updates on chronic spontaneous urticaria: EAACI 2025. Allergy & Immunol. 2025;10(1):24-27. doi:10.33590/emjallergyimmunol/XBEL1976