Talking with your patients about CSU

It’s vital that you and your patients discuss the physical manifestations of CSU (ie, wheals and angioedema)³ in as much detail as possible—but remember that these symptoms may only be the start of the impact of the disease on patients' lives.

It’s not always apparent during visits, but unresolved CSU can have debilitating consequences, and depression, anxiety, sexual dysfunction, and sleep disturbance may be observed in patients living with CSU. Uncovering the true burden requires open dialogue as well as the use of patient-reported outcome tests.^2,3

Patients with CSU don’t want to guess how they’re doing—they want to know.

Urticaria treatment guidelines strongly recommend the use of the following patient-reported outcome tests to gauge disease severity and have productive conversations with your patients³: 

• The Urticaria Activity Score (UAS7) to track patients' hives and itch

• The Angioedema Activity Score (AAS) to assess disease activity in patients with angioedema

• The Urticaria Control Test (UCT) to assess disease control in response to treatment in patients with CSU. It only has 4 questions that are on a scale from 0 to 4 with 16 being complete disease control. It provides you and your patients with an objective measure of control

Because wheals and angioedema are unpredictable and might not be present at the time of a patient’s visit, it’s important to encourage your patients to document the signs and symptoms of their CSU.³ Taking photos and bringing them to each visit is one good way to do so.

In addition to providing potential opportunities to refine your treatment plan, documentation can also help patients avoid the frustration of not being able to show you how bad their symptoms may be in the time between visits.

Expert consensus recommends antihistamines as the first line of treatment for CSU. However, they only provide adequate relief for ~50% of patients—which can leave the other half of patients with questions about the lack of efficacy, their persistent symptoms, and what happens next.^3,4

You can let your patients know that a second-generation antihistamine is suggested as first-line treatment, but there is no recommendation on which one to choose. In fact, well-designed clinical trials comparing the efficacy and safety of all modern second-generation antihistamines are largely lacking.³

According to urticaria treatment guidelines, you can outline a time-measured treatment plan with your patients, starting with a standard dose of a second-generation antihistamine, increasing the dose if needed, and assessing disease severity after 2 to 4 weeks.³

This treatment recommendation is in line with what’s been observed in real-world studies for CSU—after 2 to 4 weeks of persistent CSU symptoms on antihistamine treatment, there's no evidence that continuing antihistamines alone will have a beneficial effect.^3,5

If a patient with CSU is experiencing a severe flare and asks about steroids, it’s important that they understand the risks associated with them.

Urticaria treatment guidelines strongly advise against the prolonged use of steroids for CSU. If you deem steroids necessary for a patient who is experiencing an acute exacerbation, be sure to communicate that they should be used for no longer than 10 days of treatment.³

The rigor of this recommendation is due to the safety risks associated with long-term steroid use, including skeletal conditions like osteoporosis, infectious diseases, diabetes, and obesity as well as the possibility of several of these side effects combined.⁶

Every patient wants to know what is causing their disease, but with CSU, they might never be satisfied with the answers.

Nonetheless, you can instill confidence by showing your patients all the things you know as their health care provider. Here are some things you can tell them:

• I understand and appreciate that your CSU is more than just hives. It’s an internally driven condition^2,4 

• You're not doing anything wrong—it may just be your immune system. CSU is thought to be linked to an overactive immune system^4,7,8 

• You can't find the trigger because there is no known trigger. CSU isn’t an allergy or caused by an external trigger, so what you ate, wore, or touched have nothing to do with any flare you've had^4,7,8

• Itchy hives and/or painful swelling are common CSU symptoms.^2,5 However, you don't have to accept them as a regular part of your life

By focusing on your goal to treat them for this disease until it is gone, you could save your patient from undergoing a prolonged quest from one health care provider to another—with inconclusive tests for external triggers—that can delay their treatment.