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You may need to start considering your heart health while treating your hereditary angioedema (HAE). Research has found a connection between heart disease and HAE, which can influence medication choice and long-term prevention strategies.
Keep reading to learn how HAE and heart disease are related and how your treatment affects your cardiovascular (heart and blood vessel) health.
You’ll also find a list of questions to ask your doctor at your next appointment to make safer choices regarding your heart health.
People with type 1 or type 2 HAE have a problem with C1 inhibitor, a protein that helps regulate the body’s immune (defense) system. C1 inhibitor plays a major role in the coagulation pathway, which is a series of chemical reactions that help stop bleeding and promote healing.
When C1 inhibitor isn’t working properly, it can’t regulate a protein called bradykinin. This protein helps fluid pass through blood vessels. When there’s too much bradykinin, it allows fluid to leak into the rest of the body. Fluid buildup in the body’s tissues causes swelling.
This process is why injuries can trigger an HAE attack, even if the trauma is minor.
For example, if you go to the dentist and your gums bleed during a dental procedure, the coagulation pathway is triggered to stop the bleeding. But if C1 inhibitor isn’t doing its job while the body patches up your bleeding, you may experience fluid buildup and swelling.
The relationship between HAE and heart disease is a growing area of research. Some studies have found significant connections, while others have not.
One study of 239 people diagnosed with HAE found an increased risk of heart disease compared to people without the condition. Men in midlife (from their 30s to their 60s) reported more heart-related issues than women.
The main finding was a higher risk of developing thromboembolic disease, a condition where blood clots can form and travel through the bloodstream. Clots can block major arteries or veins, preventing blood from reaching your organs. But the study didn’t find any serious complications from clots in the group, like a stroke or heart attack.
A larger study of 581 people found different results. Participants reported an increase in heart-related chest pain, but fewer people experienced a heart attack and other cardiovascular events compared to people without HAE.
Researchers in this study think the chest pain was more related to swelling from HAE than to heart disease, and that HAE may protect against certain heart issues. More studies are needed to understand why, but the researchers think the high levels of bradykinin from HAE may play a role.
Some HAE treatments are known to have heart health risks, though they aren’t used as widely today.
For example, long-term treatment with attenuated androgens (low-strength testosterone, a sex hormone) used to be more common. Androgens like danazol (Danocrine) helped the body produce more C1 inhibitor and prevented attacks, but didn’t treat them well.
These medications could also become toxic over time and increase the risk of hyperlipidemia (too much fat in the blood), often related to high cholesterol. They can also increase the risk of obesity, which is linked to hypertension (high blood pressure).
While every medication could cause side effects, there are heart-safe alternatives now, including C1 inhibitor and other options that decrease bradykinin levels.
People with HAE need to work closely with their healthcare team when treating their blood pressure with medication.
Angiotensin-converting enzyme (ACE) inhibitors are a common type of blood pressure medication, but they shouldn’t be used in people who have HAE because they increase bradykinin levels and can trigger an attack.
Sometimes, attacks can be life-threatening. Swelling around the throat can cause shortness of breath, difficulty swallowing, or asphyxiation. Even with on-demand medications to stop symptoms from getting worse, it may not be enough to prevent an emergency.
If you’re managing HAE and high blood pressure, discuss your treatment plan and medication regimen with your doctor. Ask about other options, like angiotensin-receptor blockers (ARBs), which don’t influence bradykinin levels. They may be a safer alternative.
If you’re concerned about your heart health or risk factors for heart disease, talk to your doctor at your next appointment. See the list below for general ideas to discuss, but don’t be afraid to bring up your own concerns.
Ask your doctor if you can schedule a heart screen. This can test how well your heart and blood vessels are working. It can also see if you’re at risk, which is helpful for you and your doctor as you plan for a healthier future.
During a heart screen, your doctor may check your:
If your doctor sees abnormal results, they may refer you to a cardiologist for more testing and specialized medical advice.
Have your doctor review your current medication regimen and ask if it’s safe for your heart. Your doctor can also check whether any medications interact with each other. Be sure to provide a full list of medications — including supplements.
If your doctor says you’re taking a medication that can cause heart-related side effects (or HAE triggers), ask if the risks outweigh the benefits. Together, you can decide if switching medications is the right move.
Discuss ways you can take care of your heart health while managing HAE. Lifestyle habits, such as diet and physical activity, are generally important for protecting heart health.
Health experts consider strenuous physical activity a possible trigger for an attack. Not much else is known about other food and exercise triggers or how best to adjust your lifestyle to accommodate them.
Unfortunately, these triggers can negatively impact social and work life, travel, and general well-being. Going to the neighbor’s house for dinner, for instance, may cause anxiety because you aren’t sure if the meal’s ingredients will have a trigger.
Doctors currently advise on lifestyle factors on a case-by-case basis. Some people may have a known gluten or lactose intolerance that triggers symptoms, while others are still trying to figure it out.
Your healthcare team may suggest starting a journal to help you understand which foods or exercises cause HAE symptoms and where your threshold lies.
Maybe walking on a treadmill feels good, but jogging at 6 miles per hour causes swelling. You may want to record:
On myHAEteam, people share their experiences with hereditary angioedema, get advice, and find support from others who understand.
Have you developed heart disease after your HAE diagnosis? Let others know in the comments below.
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