A Personal Journey With Chronic Spontaneous Urticaria

In dermatology, we often talk about chronic spontaneous urticaria (CSU) in terms of mast cell activation, guideline-based treatment steps, and response rates. What we don’t always capture is the real burden: the sleepless nights, the unpredictability, the relentless trial-and-error of treatments. I understood the science as a dermatology clinician, but I didn’t fully grasp the lived experience until my own child was diagnosed.

The Beginning of the Journey

As my daughter was finishing sixth grade, she began breaking out in hives that appeared without warning. At first, we hoped it was transient. But as the weeks stretched into months, it became clear this wasn’t ordinary.

Because of insurance requirements and the need for a full workup, her path to advanced therapy was delayed, much like we see for our patients. In the meantime, she relied on antihistamines up to 4 times a day and, when flares broke through, courses of prednisone. It was a cycle familiar to many families: temporary relief, rebound symptoms, and another sleepless night.

Angioedema’s Emotional Toll

Her hives weren’t the only issue. She also developed angioedema, with swelling of her eyes, lips, hands, and feet (Figures 1, 2, and 3). The swelling was unpredictable and sometimes highly visible.

Its toll was obvious. Even after mask mandates were lifted, she often chose to wear a mask at school, not for infection control but to hide the swelling around her face. For a 12-year-old girl navigating middle school, this added another layer of stress and embarrassment.

The Long Road to Control

She endured this regimen for more than a year, through the end of sixth grade and well into seventh grade, before she finally qualified for omalizumab (Xolair). It wasn’t until midway through seventh grade that we began to see real control and, with it, glimpses of her quality of life returning.

Dual Perspectives

This experience shifted how I practice: As a mother, I felt the helplessness of watching a 12-year-old girl struggle with a disease that stole normalcy from her school years. As a dermatology NP, I saw firsthand how stepwise protocols and prior authorizations, although designed to ensure appropriate care, can inadvertently prolong negative quality of life.

More Than Just Hives

CSU is often dismissed as benign, but it is far from trivial. The daily burden of itching, flare anxiety, visible swelling, and reliance on steroids can significantly affect quality of life. Families need more than prescriptions; they need support, validation, and a clear path toward effective therapy.

Her journey reflects the spectrum of CSU: urticarial wheals (Figures 4, 5, 6, and 7) alternating with angioedema, unpredictable and disruptive.

The Next Wave in CSU Therapy

Although omalizumab has been a breakthrough for many, it is not a solution for all, and access delays remain common. Encouragingly, the therapeutic landscape is expanding:

Dupilumab (Dupixent): In April 2025, the FDA approved dupilumab for patients 12 years or older with CSU uncontrolled on antihistamines, targeting IL-4/IL-13.

Bruton tyrosine kinase inhibitors (remibrutinib, rilzabrutinib): Oral small molecules inhibit mast cell signaling, showing rapid
efficacy in findings from late-stage studies. Remibrutinib was just approved in September 2025.

Barzolvolimab: The mast cell–directed biologic is now in phase 3 trials.

Ligelizumab: The next-generation anti-IgE antibody shows promising trial data.

Other novel targets,including MRGPRX2 antagonists and SYK inhibitors, are in development, reflecting a shift toward precision immunology in urticaria.

Why It Matters

For industry, policy makers, and advocacy groups, the arrival of new therapies brings hope. They represent:

More options for patients who experience treatment failure on first-line biologics

Potential policy challenges for equitable coverage, avoiding access delays

Opportunities for advocacy to secure timely, affordable access.

Families should not have to endure years of uncontrolled disease before qualifying for effective treatment. Each new therapy represents not just scientific progress but the chance to restore normalcy to a child’s school day, a parent’s peace of mind, and a family’s quality of life.

Amanda Caldwell, MSN, FNP-C, is a dermatology nurse practitioner at US Dermatology Partners who is passionate about serving rural communities. She is also the president of the Society of Dermatology Nurse Practitioners.