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8 Signs You Should Talk to Your Doctor About Switching Your HAE Treatment

Medically reviewed by Jacquelyn Cafasso on September 26, 2017Written by Jacquelyn Cafasso on September 26, 2017
Hereditary Angioedema

Over time, hereditary angioedema (HAE) medications that once worked well may lose their effectiveness. Perhaps you’re considering making the switch to an at-home therapy, or maybe you’re curious about a new treatment.

But it can be difficult to know when to talk to your doctor and how to navigate your health insurance requirements. It’s important that you’re getting the most out of your HAE therapy because the condition can be dangerous if not treated.

If any of the following happens to you, it may be time to talk to your doctor about switching treatments.

1. You’re experiencing side effects to your current treatment

One of the most important reasons for switching treatments is if you’re experiencing side effects. The goal of your treatment is to make your life better, not worse. Certain treatments may cause bad side effects, but everyone reacts to treatments differently.

2. Your liver tests come back abnormal

Some HAE medications can have an impact on liver functions. If results of lab tests show an increase in liver enzymes or other abnormal results, your doctor may want you to change to a different medication.

3. Your attacks have increased in frequency

If you have HAE, you might be keeping a journal with details about your attacks. If you notice that your attacks increase, it might be time to switch treatments. If you start having attacks once a month or more, and are only taking on-demand treatments, it might also be time to talk to your doctor about taking preventative therapy.

A major increase in attacks might also mean it’s time to talk to your doctor about learning how to self-administer your treatment at home.

4. You’re pregnant or thinking of becoming pregnant

Pregnancy can affect the frequency and intensity of your attacks. You might have fewer attacks, or you might have more. Certain treatments might not be safe for the baby during pregnancy, while others may transfer into breastmilk after birth.

If you find out you’re pregnant or you’re trying to become pregnant, you should talk to your doctor about switching treatment. If your attacks worsen during pregnancy, your doctor might want you to switch from on-demand to preventative treatment until after your delivery.

5. You want to be able to self-administer treatment

Certain treatments are approved for administration at home. Self-administration allows you to have much more control over your life. It also allows you to get treated faster because you don’t have to leave your house for treatment.

While you’ll have to be trained on how to effectively administer the treatment, the extra effort is likely well worth the independence. Research shows that home administration of HAE medications by those who are trained is safe, with a low rate of adverse events.

It’s important to keep in mind that it may take a little time to get used to self-administration. But you’ll find that gets much easier over time.

6. You’re under a lot of stress

It’s impossible to avoid stress. But since it’s a major trigger for HAE attacks, you’ll need to do your best to reduce stressful situations.

If life throws you a curveball and you find yourself in a very worrying or hectic situation, speak to your doctor about switching to a preventative therapy.

7. You’re moving abroad

Not all HAE treatments are available in every country. HAE is rare, so doctors in some countries might not know enough about treating it.

If you’re moving abroad, consider switching to the same HAE treatment that is available in your new country before you make the move. If you don’t speak the language in your new country, make sure you have some materials translated about HAE that you can give to a doctor in case of an emergency.

Consider contacting an English-speaking doctor in your new country in advance of your move. You can also contact an HAE nonprofit organization for help.

8. You have new symptoms

HAE can affect many different parts of the body. For this reason, there’s a multitude of different HAE symptoms to be aware of, for example:

  • swelling of the feet and hands
  • severe abdominal pain
  • nausea
  • vomiting
  • diarrhea
  • throat swelling
  • non-itchy, red rash (not as common)

For a while, you may have only experienced a few of the symptoms from the list, but over time, you might start having new symptoms. If you notice a change in the typical symptoms of your HAE attacks, you should talk to your doctor to find out if a different treatment regimen would be better for your situation.

The takeaway

When you visit your doctor, be sure to describe your symptoms, including the frequency and severity of your HAE attacks and any side effects from your current drug regimen. Be sure to mention how your HAE attacks are affecting your ability to engage in everyday activities. If your goal is to switch to at-home therapy, make sure to schedule time for training.

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