6 Reasons You Might Need to Change Your HAE Treatment

Your needs and priorities naturally evolve as life goes on, and newer medications may give you choices that were not available when you started your current treatment, Dr. Banerji says.

Here are six signs that it may be time to ask your doctor whether a different treatment would be a better fit.

1. You’re Still Having Breakthrough Attacks

Not every breakthrough attack calls for a treatment change, but these patterns are reasons to take a closer look at your plan, says Brenna LaBere, MD, a pediatric allergist and immunologist at Phoenix Children’s in Arizona:

• Recurrent Attacks Your specialist will consider how often breakthrough attacks occur and how that pattern compares with the treatment goals you set together to determine whether switching to a different treatment is warranted.
• Severe Attacks Attacks that require emergency care or hospitalization are a strong reason to reassess your treatment.
• Swelling in Concerning Areas Throat swelling can affect your breathing and requires emergency care. Severe abdominal symptoms are also a reason to reassess your preventive treatment.
• Attacks That Disrupt Your Life Missing work, school, or other activities because of HAE episodes may mean that your current treatment is not meeting your needs.

Before recommending a different medication, your care team may look for other possible reasons for the attacks. Dr. LaBere says this often includes checking for missed or delayed doses, or problems with self-injection technique or medication storage, which may make treatment less effective.

2. You Want to Prevent Attacks, Not Just Treat Them

Needing on-demand medication more than once a month may be a reason to discuss preventive treatment with your allergist, LaBere says. The same goes for severe attacks that require emergency care or interfere with daily responsibilities; even infrequent attacks may have enough of an effect on your life to make preventive treatment worth considering, she says.

3. Your Lifestyle or Priorities Have Changed

Sometimes a preventive treatment controls the condition well but becomes difficult to fit into your routine. Ultimately, “the best drug on paper isn’t the best drug for a given patient if it doesn’t fit their actual life,” says Banerji.

These changes in your lifestyle or priorities might prompt an HAE treatment change conversation with your care team:

• A Busier Schedule or More Travel Frequent travel may make a daily oral medication easier to manage than an injectable, Banerji says. Or you may find that a preventive medication with a longer gap between doses is more manageable since there’s less to remember and plan around, she says.
• A New Living Situation Some people rely on a parent or partner to help with injections.

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  If your living situation changes, whether you’re moving out on your own or heading off to college, you may no longer have access to that support, Banerji says. Your specialist can help you find an option that you can manage more independently.
• A Change in Your Preferences “One patient may happily take a daily oral medication to avoid injections, whereas another patient may have more success with an injectable medication every four weeks,” says LaBere.

4. You’re Planning a Pregnancy or Changing Birth Control Methods

“Pregnancy has an unpredictable effect on HAE, and attack frequency can increase, decrease, or stay the same. It can even vary trimester to trimester within the same pregnancy,” Banerji says. That unpredictability is one reason to review your medications with your specialist before trying to conceive.

5. You’re Dealing With Uncomfortable Side Effects

• Headaches
• Infections
• Fatigue
• Digestive problems such as nausea and abdominal pain
• Reactions where an injection is given
• Rare allergic reactions

If a side effect is tied to how the medication works in your body, changing the timing or administration technique may not solve it, Banerji says. In this case, switching to another treatment is likely possible and may make more sense, she adds.

6. Administration Has Become Difficult or Stressful

Administering HAE treatment by injection or intravenous infusion may become physically or emotionally difficult with time.

How to Talk to Your Doctor About Switching Your HAE Treatment

• A Record of Your Attacks Note how often they happen, how long they last, their severity, where the swelling occurs, and any potential triggers.
• Your On-Demand Medication Use Track how often you need this medication and how well it controls the attacks.
• The Condition’s Effects on Your Quality of Life Include work, school, plans, and social activities you have missed due to attacks. Write down side effects, even if they seem minor.
• Challenges Managing Your Treatment Plan Discuss missed or delayed doses, problems with injection technique, and medication storage concerns. This information helps your care team determine whether the medication or the treatment routine needs to change.
• Changes in Your Lifestyle or Priorities Mention any new health conditions. Share concerns about travel, needles, cost, insurance coverage, family planning, and anything else that your allergist should consider when helping you choose a treatment.

When considering new treatment options, your allergist may ask you to complete a questionnaire to determine your HAE attack activity, treatment control, and quality of life, LaBere says.