Allergy & Immunology
Chronic Spontaneous Urticaria
Chronic Spontaneous Urticaria: Disease Duration, Delays in Diagnosis, and Associated Impacts
Chronic spontaneous urticaria (CSU) duration is highly variable, with many patients experiencing years of symptoms and significant related frustration. Delays in diagnosis and treatment initiation are common, often prolonging suffering. Understanding the disease course, ensuring timely referral, and advancing therapy appropriately are essential to reducing the burden on patients with CSU.
Sometimes I will have a patient referred urgently from an emergency department or urgent care center with hives, itching, or swelling, but it has been less than 6 weeks since symptom onset. When that happens, I explain to the patient that if disease duration is less than 6 weeks, this is defined as acute urticaria, and the vast majority of acute cases resolve on their own within 6 weeks.
However, when I see the patient at that point (after only a few weeks of having symptoms, for example), I cannot predict whether these symptoms will resolve quickly or progress to CSU. I will ask the patient about triggers for acute urticaria, such as a recent viral infection. In terms of CSU, the published literature varies. However, in general, approximately 25% to 50% of patients have CSU that resolves within 1 year, and over 10% may have the disease for longer than 5 years. I am very honest with patients, and I will say to them, “We do not know for sure how long your disease is going to last, but we will have close follow-up and advance your therapy so that we can work toward having you free of itch, hives, and swelling.”
One of the biggest frustrations is that it can take, on average, 2 years from the time of symptom presentation to receiving a proper diagnosis by a health care professional. Many patients with CSU present multiple times to urgent care centers, emergency departments, or their primary care physician before they are finally referred to a specialist who can diagnose CSU and start guideline-based therapies. Because the prevalence of CSU is approximately 1% worldwide, many primary care physicians do not regularly see patients with this condition, and this can contribute to delays in diagnosis.
Further, many patients are understandably confused because the disease can go into remission for a period of time and then relapse. They may think that they are cured, and then it comes back. All these factors cause delays in accurately diagnosing patients and starting them on appropriate therapy. When patients finally do come to see me, they are often very frustrated. It is important for me to hear their story to understand what they have been going through.
Regarding treatment, many patients with CSU who are eligible for escalation to advanced therapies do not receive them. We need to make sure that they are not suffering unnecessarily with CSU; we should increase therapy in a safe and timely fashion and regularly assess response. The guidelines recommend starting with a standard dose of a licensed second-generation H1 antihistamine and, if needed, advancing up to 4-fold the licensed dose. If the patient with CSU does not respond to the increased dose of the second-generation H1 antihistamine, then we discuss the option of advanced therapies. I am very excited that we now have omalizumab, dupilumab, and remibrutinib to offer our patients as advanced therapies. It is great to have options, and I always explain to patients what each therapy involves in terms of benefits and side effects so that they can choose what is best for them. There is so much new knowledge and interest in CSU right now, and that is very exciting.
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