CSU, or chronic hives with no known trigger, is a serious condition that is linked to an overactive immune. 1,2 It affects approximately 1.7 million people in the United States, and women are nearly twice as likely to experience it. 3,5 People with chronic spontaneous urticaria (CSU) experience hives and/or deep tissue swelling for 6 weeks or longer despite no known triggers.1 Symptoms can leave individuals feeling frustrated without a diagnosis, and tired, isolated, depressed, or anxious. 2, 6-8 Here you’ll find information and tools to help you navigate the diagnosis of and care for CSU.
CSU is a serious condition where people have unpredictable symptoms that come and go, including itch, hives, and deep tissue swelling (angioedema) lasting longer than 6 weeks.1 Individuals with CSU may also experience burning, stinging, or pain in their skin.1 CSU symptoms may impact many aspects of their lives.8
CSU is not like other forms of hives because it is not caused by external factors or allergens. CSU flare-ups happen because the body's own defense system gets confused; the cells that usually protect us from germs become overactive and start causing problems instead.2
CSU is primarily a diagnosis of exclusion, meaning that diagnosis comes after ruling out other conditions that have similar symptoms.9 By the time a patient has been diagnosed with CSU, which can sometimes take more than 2 years, they have likely gone through extensive testing and lifestyle changes without finding relief.7,10
Even with a formal diagnosis of CSU, people may still relentlessly search for an external trigger, hoping to find an outside answer to their CSU symptoms when the underlying cause is internal.7 This search may be frustrating and tiring and can last for months or years.7 To better understand your CSU, it is important to track your symptoms and have informed discussions with your doctor.
Many people living with CSU experience bothersome symptoms that can be disruptive.11 It’s not always apparent, but many patients with CSU are stuck in the ongoing cycle of coping with symptoms and settling for "good enough" when it comes to treatment.7
Often, antihistamines are the first recommended treatment, many of which are available over the counter. In many cases, health care providers advise people living with CSU to take higher than usual doses of antihistamines to get relief.3 However, approximately half of patients still have bothersome symptoms despite taking increased doses of antihistamines.3
At Novartis, we are committed to advancing innovation in immunology through meaningful partnerships with patient communities and exploring new approaches to meet the needs of those living with autoimmune diseases.
For more information about tracking your symptoms and navigating a CSU diagnosis, check out the following resource: My Chronic Hives Journal.
The Impact of CSU
2-4
Average time from symptom onset to diagnosis [10]
70%
Reported mild to severe anxiety and depression [8]
1 in 5
Reported missing ≥1 hour of work within previous week [12]
A Tireless Search for Triggers
While it is natural to look for causes for your chronic hives, CSU isn’t caused by an allergy or external trigger.¹ Chronic hives are thought to be linked to an overactive immune system.² Take a look to see how CSU works in the body.
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Self-Advocacy While Living with CSU
Connecting with others who live with chronic hives can help you feel less alone with your symptoms. Spontaneous Connections follows Emmeka and Lisa as they share their journeys with CSU, celebrate self-love, and practice self-advocacy. Moderator Shan Boodram and medical expert Dr Payel Gupta join them to explore their shared connections.