What to expect after changing your HAE treatment
Fact-checked by Changing hereditary angioedema (HAE) treatment can be stressful, particularly if you’ve been using the same medication for a long time. You may worry about how the new medication will compare to your previous one, or what side effects you’ll experience.
But navigating this change doesn’t have to be scary. Keep reading to learn about what to expect after changing HAE treatment, as well as questions to ask your doctor when making the switch.
Why your doctor might recommend a therapy change
There are several reasons why your doctor might recommend switching HAE medications. For example, if your current medication isn’t working well for you, and you’re experiencing more frequent or more severe HAE symptoms, they may suggest a change.
Other reasons for HAE treatment adjustment may include:
- having medication side effects that outweigh the benefits
- being pregnant or trying to conceive
- having an upcoming surgery
- changes to your insurance
- your preferences, such as wanting to reduce the frequency of injections
Don’t stop your current HAE medication until you’ve discussed a transition plan with your healthcare provider. Some treatments require overlap or careful timing to maintain protection against HAE swelling attacks.
If you are switching treatments, you likely have questions for your doctor. Consider asking them things like:
- “Why are you recommending this change?”
- “How long may it take to know whether the new medication is working for me?”
- “How should I make the switch to the new medication? When and how should I stop taking my current medication?”
- “Do I need prior authorization from my insurance before I start taking this medication?”
- “What should I do if I experience a breakthrough attack while switching medications?”
How long will it take for a new treatment to work?
There are two broad categories of HAE treatments: prophylactic and on-demand.
Prophylactic, or preventive, therapies are medications that you take regularly with the goal of preventing HAE attacks. It may take some time to determine whether these medications are working to keep HAE attacks under control. Be sure to ask your doctor how long it may take to assess the effect of the specific medication they’ve prescribed to you.
On-demand, or rescue, therapies are medications that you take when you start experiencing an HAE attack. The goal of these medications is to reduce or relieve symptoms. These medications should generally begin working within hours.
When changing HAE treatment, it’s important to be sure you understand what to expect from your new medication and how to transition from your old one. Work with your doctor to develop your treatment plan.
Tracking your swelling attacks and symptom changes
As you transition between medications, you may find it helpful to keep a log of your symptoms. You can use a tracking app, or create a simple chart to track:
- date and time the attack started
- location of swelling
- severity of symptoms on a scale from 1 to 10
- suspected trigger
- time from onset to treatment
- what medication you took, as well as the dose
- time from treatment to symptom relief
You can refer to this information during doctor visits to evaluate how the hereditary angioedema therapy change is working for you. It may also be helpful to take pictures of any swelling to show your doctor.
You might also note whether the attack interfered with work, school, sleep, or daily activities. That information can help determine whether treatment is adequately controlling the disease.
Identifying and managing potential side effects
Before you begin taking any medication, it’s important to understand the potential side effects. Ask your doctor what to expect after changing HAE treatment. They’ll be able to tell you which side effects are common. They may also be able to recommend steps you can take at home to manage mild side effects, like rotating injection sites or using a cold compress to help relieve irritation. Check with your doctor about whether these measures are appropriate for your medication and how long to use them.
When to contact your HAE specialist
It’s also crucial to ask your doctor which potential side effects are urgent and require immediate medical care. They can give you the best information for your specific circumstances and health history. If you experience any of these side effects, don’t delay in seeking help:
- trouble breathing
- swelling of your face, tongue, mouth, or throat
- side effects that get worse instead of better with time
If your HAE symptoms don’t ease within the expected time frame after using your rescue medication, contact your healthcare provider or follow the emergency action plan they’ve given you. Additionally, let your doctor know right away if you experience a breakthrough attack after starting a new preventive medication. This information can help them assess how well your new treatment is working and determine whether any changes are needed.
If you’re unsure whether a side effect is cause for concern, it’s best to ask your doctor. You can call your doctor’s office and say something like, “Hi, this is [your name], a patient of Dr. [name]. I started a [new medication] on [date] and I’ve had [describe symptom] since then. I wanted to check whether this is expected during the switch or something you need to see me for.”
You may also want to consider preemptively reaching out to a trusted friend or family member to let them know you may need support in the coming weeks. You could say something like, “I’m switching HAE medications starting [date], so for the next few weeks I might need you to [make a specific request — e.g., ‘drive me to my appointment on Thursdays’]. I’ll let you know if anything changes.”
You can even save these scripts in your phone so you have them on hand if you feel stressed or overwhelmed later.
Remember, while switching HAE medications can seem scary, sometimes the change is necessary or beneficial for your health. Ask your doctor as many questions as you need to feel comfortable with the switch so you know what to expect, and when.
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.
