Find the Right HAE Treatment

Take control of your HAE by setting up a personalized treatment plan with your doctor

There is no “one size fits all” treatment plan for hereditary angioedema (HAE). Every patient is different - from the frequency of attacks to the severity and location where they occur. That’s why it’s very important that you work closely with your doctor to create a treatment plan that’s personalized for your lifestyle and your HAE.

If you don’t have a doctor who specializes in HAE, contact HAEA’s Patient Services Team, who will connect you to an HAE treating physician near you.

Types of treatment plans

There are two main types of treatment plans for HAE:

  • On-demand treatment: Also known as acute treatment, this therapy treats sudden HAE attacks as they occur in order to relieve symptoms associated with the attack.
  • Preventative treatment: Also known as prophylactic treatment, this therapy is used by patients on a regular basis to prevent or reduce the number of HAE attacks. However, even with preventive treatment, sudden (breakthrough) attacks can happen.  

Follow these guidelines

When you are discussing treatment options with your doctor, keep in mind the US HAEA Medical Advisory Board’s 2013 treatment guidelines:

  • Work with an HAE specialist. Make sure you are treated by a knowledgeable and experienced HAE physician and that you keep open and ongoing communication with him or her.
  • Establish an on-demand treatment plan. Every HAE patient should have an on-demand treatment plan to treat sudden HAE attacks as they happen.
  • Treat sudden attacks. Because of the seriousness of this disease, it’s important that you treat sudden HAE attacks as soon as possible, regardless of location.
  • Treat early. The sooner your on-demand treatment is administered during an attack, the more effective it will likely be.

On-demand treatment options

There are currently four types of on-demand HAE treatments approved by the Food and Drug Administration (FDA) to treat sudden HAE attacks:

  • pasteurized form of plasma-derived C1 esterase inhibitor (C1-INH) for treatment of abdominal, facial, or laryngeal attacks of HAE in adult and adolescent patients
  • plasma kallikrein inhibitor for treatment of HAE attacks in patients 12 years of age and older
  • bradykinin receptor antagonist, indicated for treatment of HAE attacks in adults 18 years of age and older
  • A plasma-free, recombinant C1-INH therapy for the treatment of acute attacks in adults and adolescents with HAE

In addition to developing an on-demand treatment plan, you and your doctor should also work together to manage other ailments that may occur during a sudden HAE attack, such as dehydration, which can result from vomiting during a stomach attack.

Preventative treatment options

For some patients, on-demand treatment alone is not enough to properly manage their HAE, so they may seek preventative treatment as another option. Preventative treatment involves taking medicine on a regular basis to lessen the severity and frequency of sudden HAE attacks. Preventative treatment may also be given to HAE patients before an event that may trigger an HAE attack, such as a medical or dental procedure.

There are currently two types of preventative treatments approved by the FDA to reduce frequency of sudden HAE attacks:

  • Attenuated androgens, or anabolic steroids
  • C1-INH [human] to help prevent swelling and/or painful attacks in teenagers and adults with HAE

Get financial help for treatment

Many drug companies offer special programs to patients who need medication but cannot afford it. If you are struggling to receive treatment due to financial barriers or insurance issues, check with your HAE treatment’s drug manufacturer or contact HAEA's Patient Services for additional information.

On-demand treatment option

Find out about an on-demand treatment option available for patients 12 years of age and older.
Learn more

Be your own treatment advocate

Set up a treatment plan that's right for you by working closely with your doctor.
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