Hereditary Angioedema Triggers: What Sets Off HAE Attacks?

Knowing what to watch for — and taking steps to steer clear of or limit your exposure — can help you or your child stay protected.

HAE triggers do not affect everyone the same way and may not affect some people at all.

“They can vary by the person,” says Timothy Craig, DO, an allergist and immunologist with Penn State Health in Hershey, Pennsylvania.

Physical Stress

• Minor trauma such as a cut or bruise
• Surgery or medical procedures, especially those involving your throat or upper digestive tract

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• Dental work, which can cause trauma to the mouth or gums, leading to swelling

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• Repetitive hand movements such as typing, prolonged writing, hammering, shoveling, bouncing a ball, or lifting weights, which put pressure on your hands and can set off swelling

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Illness

• Viral infections, such as a cold, flu, or COVID-19
• Gastrointestinal infections
• Other infections

Emotional Stress

“So the stress might not actually be a trigger,” he says. “It might be part of the attack itself.”

Hormonal Changes

Certain Medications

If you are taking medications for other conditions and have HAE, it’s important to talk to your doctor about potential interactions. Medications that may be HAE triggers include:

• Systemic estrogen-based medications, such as hormonal birth control or hormone replacement therapy; these are generally discouraged for menopausal women with HAE.

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• ACE inhibitors used to treat high blood pressure: “They can lead to swelling via an elevation in bradykinin, which is the same molecule that drives swelling attacks from HAE,” Dr. Oh says.

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Allergens

HAE attacks aren’t allergic reactions. But if you have an allergy, you might find that exposure to your allergen can trigger an HAE attack.

“Anything that dysregulates your immune system, including allergens, can put you at higher risk of having a reaction,” Craig says.

• Pollen
• Contact allergens such as latex, certain metals, or chemicals
• Food
• Insect stings
• Pets
• Dust mites
• Mold

It’s a good idea to keep track of your potential HAE attack triggers. When you know what sets off your symptoms, you can take more steps to steer clear or act proactively after an exposure, Oh says.

One reason to track triggers and attacks carefully is that the two are not always obviously related. “When you have an attack followed by a medical procedure, for instance, it’s easy to put two and two together,” Craig says. “But it’s harder to put that correlation together when you play basketball today, and you get swelling a few days later.”

Share possible connections with your care team. Always seek guidance from your doctor before making behavioral changes based on your suspected triggers.

Managing your exposure to triggers when possible can help you get more of your attacks under control. Here are some tactics that can help.

• Talk with your doctor or dentist about procedures ahead of time. Because these procedures may be a trigger, your doctor may have you take a medication such as a C1 inhibitor beforehand to control inflammation.

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  “It is very important that administration of the medicine be timed appropriately to prevent attacks,” Oh says.
• Review your medications. Talk with your doctor about treatment options if you’re taking or are considering taking an ACE inhibitor, hormonal birth control, or hormone replacement therapy.

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   If you are pregnant or trying to get pregnant, talk to your doctor about the medications you are taking. Anabolic steroids used to treat HAE should be avoided during pregnancy, for example.

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• Be proactive about illness prevention. You can’t keep every germ at bay. But you can greatly limit your opportunities for getting sick by washing your hands frequently, avoiding people who are sick, and wearing a mask in crowded spaces. You can also talk with your doctor to make sure your vaccines are up to date.
• Protect yourself against allergens. This may include monitoring pollen counts if you have a pollen allergy and reading food labels if you have a food allergy.
• Limit repetitive activities. Avoiding putting pressure on your hands may help stave off attacks, Craig says.

• Restlessness
• Trouble relaxing or concentrating
• Racing heartbeat
• Frequent headaches
• Stomachaches

Your doctor can refer you to a mental health expert who can help you find ways to cope and potentially keep future attacks at bay.

• Specific triggers account for about 40 percent of hereditary angioedema attacks: Identifying and managing them could help you reduce your frequency of attacks.
• Common triggers include physical stress, illness, hormonal changes, certain medications, estrogen-based treatments, and allergens, though triggers vary by person.
• Tracking your symptoms and potential exposures using an app or journal can help you identify patterns and share important information with your care team.
• If worrying about HAE triggers causes anxiety, talk to your doctor about mental health support.