A Hereditary Angioedema (HAE) attack can throw off your schedule, get in the way of your daily activities, or even require hospitalization. But there are ways you can manage your HAE so that you can live a full, healthy life.
Develop a treatment plan.
Having a treatment plan can help you better manage your HAE and prevent and prepare for attacks. An effective treatment plan can help you:
- Be aware of your triggers
- Know what to do when an attack happens
- Always have the right treatment on hand (even if your HAE changes from time to time)
You doctor will work with you to develop a treatment plan that’s right for you. Be sure your plan includes both a main and a back-up treatment.
Track your triggers and attacks.
Knowing as much as you can about your triggers and attacks can help you avoid your triggers, and find out which treatments work best for you.
The best way to track your triggers and attacks is to keep a diary that includes:
- Details about your attacks. Record when and how often your attacks happen, as well as how long they last. Include what treatment you used and how you responded.
- Any triggers that may be linked to your attack. Known triggers can help point out any patterns.
- Early signs of attacks. Common signs are tingling, tiredness, nausea, flu-like symptoms or rash. Prevent a full attack by starting treatment early.
Bring your diary to all your doctor visits. Your doctor can review it to make sure you’re getting the right HAE treatment. Your HAE CareTeam will also review your attack diary with you as well. If you have any questions about using a diary or tracking triggers, call your doctor or your CVS Specialty HAE CareTeam.
Have an emergency back-up plan.
You may still experience HAE attacks from time to time, even when you use prophylactic medication and avoid triggers. You can manage some minor attacks at home by yourself or with a nurse’s help, but you will need to go to the hospital for severe or life-threatening attacks. Either way, it’s best to be prepared by having an emergency back-up plan.
Make plans with your treatment center and local hospitals so they are always ready to treat an attack. Be sure they have your medication on hand or will allow you to bring it with you. Work with your CVS Specialty HAE CareTeam so you can get your medication sent to your treatment center, local hospital or directly to you.
Here are some tips to help you prepare for an HAE attack:
- Teach family, friends, and coworkers about your HAE
- Talk to your doctor and dentist if you have dental work or surgery scheduled
- Work with your local hospitals so they have your HAE medical information
- Keep a diagnosis letter, filled out by your doctor, with information about HAE, your treatment plan and your doctor’s contact number
It’s also a good idea to carry an emergency wallet card that describes your HAE. It should include:
- Your name
- Emergency contacts
- Doctor’s emergency contact information
If you have questions or need help in preparing an emergency plan, talk to your doctor or call your CVS Specialty HAE CareTeam at the phone number listed on your prescription label.