Beyond swelling: Other HAE symptoms you should know about
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Hereditary angioedema (HAE) is a genetic disorder caused by mutations that lead to the overproduction of bradykinin — a protein that promotes blood vessel dilation and allows fluid to flow from the bloodstream into surrounding tissues, resulting in swelling.
Sudden attacks of swelling are the hallmark symptom of HAE. People with HAE also may experience a range of other disease-related angioedema symptoms, which can accompany swelling attacks or even happen without swelling.
Non-swelling symptoms of HAE
In addition to swelling, people with HAE may experience a range of symptoms including:
- fatigue
- stinging, tingling, numbness, or pins-and-needles sensations
- rumbling feelings throughout different body parts
- erythema marginatum (a type of skin rash that looks red and inflamed, but usually is not itchy)
- itching
- bruises
- headache or other pain without an obvious cause
- flu-like symptoms
- fever
- stomachaches and abdominal pain or cramping
- nausea and vomiting
- excessive sweating and changes in body temperature
- appetite changes
- emotional changes, such as feeling irritable, restless, sad, and/or anxious.
HAE symptoms appear most often just before, during, or after a swelling attack. Many people with HAE report they are able to tell when a swelling attack is about to happen because they start to notice other symptoms, although the specific symptoms that precede swelling attacks can vary widely from person to person.
Some people with HAE also report symptoms unrelated to swelling attacks.
Because swelling attacks are the main symptom that causes serious health issues in HAE, the non-swelling symptoms are not as well studied, so there is not much data on how common it is to experience HAE symptoms when not having a swelling attack.
Do HAE symptoms disappear on their own?
When not treated, swelling and other HAE symptoms usually will worsen gradually for 12 to 36 hours, and then resolve in the next two to five days.
Several treatments are available that can help address attacks more quickly, allowing patients to get back to their daily lives without having to deal with swelling and other symptoms. Treatment is critical for attacks that pose life-threatening danger, particularly swelling in the throat that can block off breathing.
Can you have an HAE attack without swelling?
Although swelling is the main symptom associated with HAE attacks, some people report disease symptoms without obvious swelling.
In recent years, several prophylactic (preventive) therapies have become available that can decrease the risk of swelling attacks substantially in HAE and improve the person’s quality of life.
Some people with HAE who are using these therapies report they still sometimes experience symptoms that used to signal an attack was about to happen, even when the swelling doesn’t actually occur.
HAE attack early warning signs
Most people with HAE experience some early symptoms before the onset of a swelling attack. These early signs are referred to as a prodrome, and they can include:
- fatigue
- pain or muscle aches
- feelings of tightness, prickling, pressure, or itch in the skin
- redness or rash
- nausea
- pressure or pain in the abdomen
- irritability, anxiety, and other emotional changes.
Early HAE attack symptoms can occur anywhere from a few hours to a few days before the swelling attack.
While not everyone with HAE will experience early symptoms before swelling attacks, most people with the disease report having these symptoms. The specific symptoms that precede the attack vary from person to person, but for any one person with HAE, early symptoms often are similar before each attack.
Since people with HAE generally have several swelling attacks over the course of their lives, most say they are able to tell when an attack is about to happen based on their early signs.
Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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FAQs about alternative HAE symptoms
In hereditary angioedema (HAE) the main symptom that can cause serious medical problems is swelling, which is why swelling attacks are usually the focus of treatment. However, HAE can cause a range of non-swelling symptoms even when there isn’t any swelling. It is recommended that people with HAE consult with their clinical care team about any of their symptoms.
Without treatment, swelling and other symptoms of hereditary angioedema (HAE) attacks tend to go away after a couple of days. Treatments are available that can help resolve attacks faster. Some HAE symptoms can pose life-threatening danger, such as swelling in the throat that affects breathing. When this happens, getting treated immediately is critical.
Hereditary angioedema (HAE) affects everyone differently. Essentially all people with HAE have swelling attacks, but the frequency and severity of these attacks can vary widely. People with HAE may also have non-swelling symptoms that accompany attacks or occur without any swelling, these can also be different from person to person.
In addition to swelling, people with hereditary angioedema (HAE) may have symptoms such as fatigue, headache, nausea, vomiting, redness in the skin, unusual sensations like tingling or prickling, flu-like symptoms, abdominal pain, and emotional changes like irritability or anxiety.
If you experience new or worsening symptoms of hereditary angioedema (HAE), you should talk to your healthcare provider as soon as possible. Breathing difficulty, in particular, could be an emergency situation.
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