Chronic spontaneous urticaria

Chronic spontaneous urticaria (CSU) is the medical term for chronic hives (rash/wheals) and/or deep tissue swelling (angioedema) that lasts for at least 6 weeks.^1,5

CSU is an unpredictable and debilitating skin condition, where the underlying cause is often internal rather than exposure to any allergen or external trigger.¹ It affects over 40 million people worldwide, and women are twice as likely to be affected than men.^2,3 Living with CSU can be very distressing and it can have a severe impact on quality of life, including sleep and daily activities. ^1,2,4

It’s possible to live a life with CSU without interruptions. Start a conversation about how itch affects daily life and overall wellbeing and find hope for a life less disrupted by CSU.

About the condition

Symptoms

CSU is characterized by the spontaneous and reoccurring appearance of hives (rash/wheals) and/or deep tissue swelling (angioedema).^1,5 The burning rash and painful swelling can appear anywhere, but often affect visible areas like the face, making everyday interactions unbearable.^1,4 These debilitating flare-ups can happen at any time and without warning, lasting anywhere from 6 weeks, to months, to years.^1,2 Recent survey findings show that 70% of people with CSU say treating the debilitating itch is their most important treatment goal.⁶

Unlike other forms of hives, in some cases, symptoms of CSU are not triggered by external factors or allergens, but by inappropriate activation of the immune system.¹ Immune cells are activated by a protein called Bruton’s tyrosine kinase (BTK) and release a substance called histamine, which causes the unpredictable flares of burning itch, hives, and/or deep tissue swelling seen in CSU.^1,7-10

CSU in everyday life

The unpredictable nature of CSU causes a severe impact on quality of life, including emotional wellbeing, relationships, daily activities, professional and academic life, finances, and sleep.^2,11

In a recent survey, almost 80% of people living with CSU reported disruptions to their sleep as a result of the unpredictability of the condition.⁶ Uncontrolled itch means those living with CSU take longer to get to sleep and sleep for shorter periods of time.^12,13 In turn, impaired sleep leads to increased daytime dysfunction.¹²

Research also shows that over half of CSU patients report a significant impact on work, including up to ~40% productivity loss up. In some cases, patients report challenges keeping employment.¹⁴

Managing CSU

In a recent survey, doctors and patients reported CSU symptoms differently: 76% of people with CSU, the majority being treated with antihistamines, said they continue to experience symptoms despite treatment, while doctors believe only 22% are still affected.⁶ Another study also showed this difference in reporting, with over one in four patients reporting symptoms as more severe than their doctor.¹⁵ These differences may arise from intermittent CSU symptoms and unpredictable flare-ups, which make it difficult for people living with CSU to communicate the full impact of symptoms during appointments.^15-18

Antihistamines are currently the recommended first-line treatment option for CSU, but over half of people with CSU still experience symptoms despite treatment.^2,5 Studies have found that increasing antihistamine treatment to four times the standard dose only delivers incremental improvement, with 45-55% of patients remaining symptomatic.^19,20

Beyond antihistamines, injectable biologic therapies have been shown to be an alternative, but fewer than 20% of patients worldwide are treated with them.²¹

It’s important for patients and doctors to have conversations about the itch and how it impacts daily life and sleep.

Support and resources

CSU symptoms, like uncontrolled itch, substantially impact quality of life.^16,22 By working together, patients and doctors can find ways to move beyond the itch and swelling and find hope for a life less disrupted by CSU.

For more information about tracking and managing symptoms, check out the following resources: 

• Global Allergy & Airways Patient Platform (GAAPP) for patient support at an international level
  • Visit their members page to find local patient support groups, which may provide emotional support, practical advice, and opportunities to connect with others who are living with CSU
• UCARE CRUSE app for tracking symptoms, which can be a useful tool for patients to use in medical appointments to explain the frequency, duration, and daily life impact of flare-ups