HAE attacks are hard to predict
Hereditary angioedema (HAE) symptoms vary greatly from person to person. HAE symptoms can also change within the same person. For instance, the frequency of attacks might increase as a person enters adolescence. It can be difficult to predict what will happen during an attack because swelling can start in one location and spread to another.
Preventive treatment may be an option for long-term HAE management. Preventive treatment involves taking medication as prescribed to help prevent or reduce the frequency and severity of HAE attacks.
Common areas affected
by HAE attacks
Common symptoms of HAE can include attacks of swelling that can happen anywhere in the body. The commonly reported locations include: face, throat, abdomen, hands, genitals, and feet.
HAE attacks can be painful and disabling and can sometimes make it difficult to perform everyday tasks. An attack affecting the airway can become life-threatening because of the risk of suffocation.
HAE attack triggers
Some people with HAE have noticed their attacks can be set off by a trigger, such as:
- Emotional stress
- Minor trauma, surgery, or dental procedure
- Hormonal influences, like menstruation or using a contraceptive containing estrogen
- Mechanical pressure from physical activities, like mowing the lawn or prolonged use of scissors
Keep in mind, HAE can vary a lot from person to person, so your triggers might be different from someone else who has HAE.
KELLY: Hey, my name is Kelly, and this is My Reimagine Vlog.
KELLY: Hello, my name is Kelly. I live in a small town in North Carolina, and I work as a branch manager at a bank. I've been taking TAKHZYRO for more than 2 years. The first time I went hiking was when I was in middle school–there was a trail with a bunch of stairs that led to the top of a mountain. I remember reaching the top and the amazing sight and seeing everything and thinking wow, I made it. When I woke up the next day after the hike, I had swollen legs and swollen feet. The thing is, I was diagnosed with hereditary angioedema, or HAE, when I was 7, but I never let my condition stop me from doing what I wanted to do. I especially didn't let it stop me from my love of hiking, and I kept at it through the years. Growing up with HAE was always an uphill challenge for me. Kids were harsh, and I was teased a lot.
KELLY: I remember going home one day and crying and not knowing what to do. Well, when I had swells at school, if there were things that I could hide, whether it was, you know, my feet or my legs, I just didn't talk about it or draw attention to it. But it was when I had swells at school that I couldn't hide, whether it would be my hands or my face. Luckily, I have an older brother who has always been there for me. He brought a crown over that night, a huge one, and told me to put it on my head. He told me to look down, and of course when I did, the crown slid off my head. He asked me to pick it up off the ground and wear it again—this time holding my head high. My brother said: "This crown represents your self-worth and your confidence. You should be able to walk into every room with your head held high, because you deserve respect and love. I want you to own your disease, your HAE."
KELLY: Those words have never left me, and I began to accept that fact. I had HAE, I couldn't change that fact, but I didn't have to be ashamed of it. It was still an uphill journey through the years, trying to find the right treatment for me, and I was still having attacks 1 to 3 times a week. Sometimes they were so severe that I had to go to the hospital. I knew that I wanted to find a preventive treatment because my HAE was getting in the way of how I wanted to live, so I did some research, and I found out about TAKHZYRO. I actually brought it up with my doctor.
KELLY: I was interested in TAKHZYRO because it was a once-every-2-weeks subcutaneous injection used to prevent HAE attacks in people 12 years of age and older. Of course, before making the decision to start TAKHZYRO, my doctor and I discussed several potential risks such as serious side effects, including allergic reactions, as well as more common risks, including injection site reactions, upper respiratory infections, and headaches. My doctor was very specific with me about the symptoms of an allergic reaction and told me to call or get emergency help right away if I ever experienced any of the following: wheezing, difficulty breathing, chest tightness, fast heartbeat, faintness, rash, or hives. We also discussed how TAKHZYRO could help reduce the frequency and the severity of my attacks. Sometimes on my hikes, before I reached the top, there are rest areas or viewpoints. When I first started TAKHZYRO, my doctor told me it wouldn't instantly work.
KELLY: There's this thing called "steady-state" that your doctor might talk to you about. What that means is that it takes time for TAKHZYRO to get to a constant level in the body. You have to have patience to wait for TAKHZYRO to reach that “steady-state”. About 10 weeks is around the time that my doctor said TAKHZYRO would take to build up fully in my body. Steady, state. Know that the rest areas or viewpoints are just stops along the way, and it's important to keep moving forward. Since starting TAKHZYRO, I've experienced less frequent attacks. I still experience attacks on treatment with TAKHZYRO, but the severity of my attacks decreased. I've also experienced several attack-free months since starting TAKHZYRO. Every patient's experience is different, so it's important to work with your doctor to see if TAKHZYRO would be a good option for you. I think about the first time I went hiking and where I am today. I have a whole new perspective now through my journey with HAE and TAKHZYRO. I am who I am because of the challenges I faced, and I am where I am because I kept my head up.
KELLY: Sometimes the longest hikes are the most rewarding, and TAKHZYRO has helped me reimagine my life with HAE.
NARRATOR: TAKHZYRO (lanadelumab) is a prescription medicine used to prevent attacks of hereditary angioedema (HAE) in people 12 years of age and older. It is not known if TAKHZYRO is safe and effective in children under 12 years of age. TAKHZYRO may cause serious side effects, including allergic reactions. Call your healthcare provider or get emergency help right away if you have any of the following symptoms: wheezing, difficulty breathing, chest tightness, fast heartbeat, faintness, rash, and/or hives.
NARRATOR: The most common side effects seen with TAKHZYRO were injection site reactions (pain, redness, and bruising), upper respiratory infection, and headache. These are not all the possible side effects of TAKHZYRO. For more information, ask your healthcare provider or pharmacist. You may report side effects to the FDA at 1-800-FDA-1088.
NARRATOR: TAKHZYRO has not been studied in pregnant or breastfeeding women. Talk to your healthcare provider about the risk of taking TAKHZYRO if you are pregnant, plan to be pregnant, are breastfeeding, or plan to breastfeed. Talk to your healthcare provider about TAKHZYRO, the only preventive HAE treatment you take as a subcutaneous injection just once every 2 weeks.
TAKHZYRO is a preventive treatment for HAE you take just once every 2 weeks, or once every 4 weeks for children 2 to less than 6.SEE MORE ON TAKHZYRO
Do you know about the 2 main types of HAE treatment?Discover the types