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Is Preventative Therapy Right for Your HAE?

Medically reviewed by Alana Biggers, MD on September 26, 2017Written by Jacquelyn Cafasso on September 26, 2017
hereditary angioedema

There are two types of treatments for hereditary angioedema (HAE). One is on-demand treatment, and the other is preventative (prophylactic) treatment. If you have HAE, you may already know a lot about treating sudden attacks with an on-demand treatment. But for some people, preventing an HAE attack is a necessary part of their treatment plan.

No two people with HAE are the same. Before your next doctor’s visit, take a look at your current situation. Think about your particular HAE symptoms. You may be a candidate for preventative therapy if any of the following applies to you.

You experience HAE attacks more than 24 times a year

Although no strict criteria exist, experts suggest taking preventative therapy if you have more than 24 HAE attacks per year or greater than 12 severe attacks per year.

You often have laryngeal attacks

Laryngeal (throat) attacks are the most life-threatening type of HAE attack. Based on your history of throat swelling attacks, your doctor may recommend preventative treatment.

You’re having surgery or dental work

Short-term preventative therapy is recommended before undergoing a surgical procedure, especially dental work. Both the physical and emotional stress associated with surgery may trigger an HAE attack. If you’re undergoing surgery or dental work, your doctor will likely recommend short-term preventative therapy.

You live far away from a hospital

If you live in a rural area and getting to a hospital takes a long time, you might want to consider preventative therapy.

HAE attacks make it difficult to do your job or go to school

HAE attacks can last for days at a time, and you might have to spend a lot of time in the hospital. While laryngeal attacks are considered the most severe form of HAE, for some people, attacks in the feet or hands can also be very debilitating. This is especially true if your job entails working with your hands, or you’re on your feet all day. People who experience frequent attacks can miss up to 150 days of work each year.

If you find that your HAE makes you frequently miss work or school or it makes it hard to do your job, you may be a good candidate for preventative treatment.

Your quality of life is suffering

Because of the unpredictability of attacks, people with HAE may limit what they do. They may not go to college, accept their dream job, or travel away from home because they’re afraid of having an attack. Some people with HAE become depressed.

How people handle their HAE symptoms varies from person to person, but if you feel that your quality of life is poor due to your condition, you have every right to ask your doctor about preventative therapy. Your doctor can help you weigh the pros and cons.

You are under a large amount of stress

Stress is a trigger for HAE attacks. Life is unpredictable. If you’re undergoing a stressful period of your life, whether it be at home, at work, or at school, preventative therapy may be a good idea.

Next steps

If you think you’re a good candidate for preventative treatment, talk to your doctor. The decision isn’t made on a rigid set of criteria, but should take into account your particular case, including:

  • frequency of HAE attacks
  • number of days with swelling
  • occurrence of laryngeal attacks
  • your proximity to a hospital
  • how often you miss school or work
  • upcoming surgeries
  • your preferences

Prophylaxis treatment options include the following:

  • low-dose androgen therapy
  • antifibrinolytic agents
  • fresh, frozen plasma
  • C1 inhibitors indicated for prophylaxis

Have your doctor go over the dosing and administration for each of these, as well as the most common side effects before making a decision. Your symptoms and the severity of your disease may change over time, so you should revisit a decision to take preventative HAE treatment on a regular basis. Keep in mind that even if you decide to take a prophylactic therapy, you should also have access to an on-demand treatment at all times.

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