Swelling anywhere in the body can be painful, scary, and hard to predict. Angioedema attacks can also disrupt your daily life with little warning.
Your doctor can help you understand what may be causing your attacks, how to spot early symptoms, and which treatments may help prevent or reduce swelling.
Here are some questions to bring to your next appointment. They can help you and your healthcare provider make a plan for swelling caused by hereditary angioedema (HAE).
HAE causes severe swelling episodes. These attacks affect the skin and mucous membranes. Mucous membranes are the moist inner linings inside certain body parts, such as the mouth, throat, and airways.
Attacks often result in swollen feet and hands, as well as swelling in your airway, face, and gastrointestinal tract. The gastrointestinal tract includes the stomach and intestines.
Most people with HAE have the inherited form of the condition. This means a genetic change is passed down from a parent.
People with this form don’t make enough of a protein called C1 inhibitor (C1INH). This can lead the body to produce too much bradykinin. Bradykinin is a substance that can cause fluid to leak into soft tissues. This fluid buildup causes swelling.
Many HAE attacks happen without a clear trigger. However, some attacks may be linked to certain factors, such as stress, infections, injuries, surgery, dental procedures, exposure to cold, or sitting or standing for a long time.
An HAE attack can also be triggered by taking certain medications. These include blood pressure medications called angiotensin-converting enzyme (ACE) inhibitors and hormone-based drugs like birth control that could trigger HAE attack symptoms. If you take these medications, ask your doctor whether they could be linked to your swelling.
It’s important to be able to tell the difference between an HAE attack and other causes of angioedema.
Some people confuse HAE swelling with acute allergic angioedema or idiopathic angioedema. Acute allergic angioedema is swelling caused by an allergic reaction. Idiopathic means the cause is unknown.
One key difference is that HAE doesn’t cause hives, but acute allergic angioedema often does. Also, allergy medications like antihistamines and corticosteroids usually do not help HAE. These medicines may help with acute allergic angioedema or idiopathic angioedema.
Medications can also cause angioedema. For example, ACE inhibitors for high blood pressure can cause swelling even after a person has taken the medication for years.
If you aren’t sure whether your swelling is caused by HAE or another cause, talk to your doctor. They can help you pinpoint the cause and find solutions.
Your doctor can help you make a plan to have fewer swelling episodes and make them less severe. Below are several questions that might help you get the conversation started.
Before you can make a plan to reduce swelling, your doctor will need to confirm which type of angioedema you have. This can help you and your doctor choose the right ways to prevent future attacks. Ask your doctor which tests they recommend so you can get a confirmed diagnosis.
To pinpoint your angioedema type, your doctor may:
The first step to pinpointing your angioedema triggers is confirming which type of angioedema you have.
If you have HAE, a doctor may ask you to track your attacks by recording when an episode happened, which parts of your body were affected, and whether you were doing anything specific beforehand. You should also note how long the swelling lasted and whether anything helped you feel better.
Your doctor can review your tracking notes to look for patterns. For example, if you recently started taking an ACE inhibitor or estrogen, they may be able to connect that medication to an HAE attack. They can also work with other members of your care team to adjust your medications and help reduce future attacks.
If you have acute allergic angioedema, your provider will share the results of your allergy testing. These include a list of your allergens, such as penicillin, pollen, or shellfish. Then you can avoid those allergens to reduce swelling.
In idiopathic angioedema, no allergies are found, but triggers such as illness or stress may bring on an attack.
Ask your doctor what to do if you notice HAE attack symptoms. They can tell you whether to take certain medications to help make an attack less severe. They’ll also be able to tell you when to take these drugs, because timing may be very important.
Your healthcare providers can also give you a list of symptoms to look for so you know when to get emergency care versus when you can manage swelling at home. For example, if swelling affects your voice box (called a laryngeal attack), it could cause trouble breathing. Your doctor will likely want you to go straight to the emergency room rather than calling the clinic in this case.
If you have acute allergic angioedema, your doctor may ask you to carry an epinephrine injector with you in case you encounter an allergen and have a reaction.
Some people with HAE may benefit from preventive treatment. These medicines may help stop attacks before they start.
In some cases, your doctor may advise taking preventive HAE treatments long term to reduce attacks. In other cases, you may only need preventive medicine before a known trigger, such as a dental procedure.
If you have acute allergic angioedema, your doctor may prescribe medications that can cut the risk of having an allergic reaction. That way, if you accidentally come into contact with an allergen, you may not have severe swelling.
People with idiopathic angioedema often do well with antihistamines. If you have symptoms often, your doctor may suggest taking antihistamines every day to help prevent or reduce swelling.
After an HAE diagnosis, your doctor can help you create an action plan. If you already have a plan but still have severe or frequent swelling, talk with your angioedema specialist.
If needed, your doctor may be able to adjust your preventive medications, prescribe new drugs for reducing swelling once it starts, and offer tips on how to spot early symptoms.
Working closely with your care team can help you create an HAE action plan that fits your needs. This plan can help you reduce swelling attacks, know what to do when symptoms start, and feel more prepared.
On myHAEteam, people share their experiences with hereditary angioedema, get advice, and find support from others who understand.
Have you asked your doctor additional questions about reducing angioedema swelling? Let others know in the comments below.
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