When Jenny started TAKHZYRO, it wasn’t smooth sailing: she was still getting swells and began to question if it was the right treatment for her. With the support of Juan, her husband and caregiver, she stuck with it and these days she has the possibility to live with fewer and less severe HAE attacks.
JENNY: Hi, my name is Jenny and this is My Reimagine Vlog. David, are you ready?
JENNY: For some spinning?
DAVID: Oh, yeah.
JENNY: Hello, my name is Jenny, and I've been taking TAKHZYRO for more than 2 years. However, I don't think I would have made it this far if not for my caregiver, partner, and husband Juan. It's certainly been a long journey with hereditary angioedema, or HAE, but I've had him with me for a large part of it. He’s seen me when my attacks are so bad that I have to stay in bed and move as little as possible. When I just have to sleep it off and I'm out of commission for days.
JUAN: How did this relationship start? Jenny and I met in Spain where we were college students. Jenny was studying abroad, and she asked me out on our first date.
JENNY: True story. Juan is from Spain and I asked him out for not like a date, date. It was a, "Hey, I'm here studying Spanish. You clearly speak English, so let's do an Intercambio." So it was a total language-geek first date.
JUAN: All I remember was, did a cute girl just start asking me out? "Yep, I'll be there." We had lived a long-distance relationship for so many years before we got married. Got married in Spain, got a teeny tiny little apartment, maybe like half an hour away from the Mediterranean, dog, life, you know. But we did want to start a family. So, you know, did a balance, what should we do? So we decided, packed it all up. And here we are a few years later. I mean, we exchanged a little house right away from the Mediterranean to living in New England winters. But I can't say that's too bad of trade.
JENNY: Oh, so sweet.
JENNY: Despite being on a preventive medication already, when I heard about Takeda's preventive treatment TAKHZYRO, a once-every-2-weeks subcutaneous injection, I used this as an opportunity to reach out to my doctor and discuss my HAE management plan.
JENNY: We both took a hard look at the clinical trial data, and we thought it might offer me a chance to experience less severe attacks compared to before being on preventive medication. We discussed the potential risks associated with TAKHZYRO. And my doctor went through the serious side effects, including allergic reactions, as well as more common side effects, including injection site reactions, upper respiratory infections, and headaches. We discussed the symptoms of an allergic reaction. And my doctor told me to call or get emergency help right away if I experienced any of the following symptoms: wheezing, difficulty breathing, chest tightness, fast heartbeat, faintness, rash, or hives.
JENNY: After discussing everything at length, I felt comfortable moving forward with TAKHZYRO as my preventive medication. When I started TAKHZYRO, it wasn't exactly smooth sailing. There was a transition period for a few months when I was still getting frequent swells, and I was questioning if TAKHZYRO was right for me. I had to stay home during that time, and Juan would take off work to take care of the boys. Whenever I got an abdominal attack, I would be physically drained. I felt like a battery that was at 0%. But I pushed through with rest, self-care, and by asking for help. It's important to have help. You should not be afraid to ask for it when you need it.
JUAN: And I reminded Jenny that she made this choice carefully with her doctor and I and to stay strong. One consideration that was important to Jenny when she started TAKHZYRO is that it is taken every 2 weeks and that the injection only takes up a small part of her day. I would encourage anyone who is beginning treatment with TAKHZYRO to talk to their doctor about what to expect when they first start and how long it will take for TAKHZYRO to get to a constant level in the body. Seeing Jenny in pain was not easy. And I knew I had to stay strong for our family, but I'm really glad she stuck with it.
JENNY: I continued to take TAKHZYRO, and now, more than 2 years later, my attack frequency and severity have decreased. I still get abdominal attacks once in a while, but I have my acute treatment with me at all times, so I'm prepared. But these are my experiences, and not everyone's experiences with TAKHZYRO will be the same.
JENNY: Knowing that HAE is a genetic condition, we got our sons tested as early as possible. David, our oldest, tested negative, but Sebastian tested positive for HAE in September 2019. Thoughts of guilt flooded my mind after I received that dreadful call. I cried, and I cried a lot. I had to pick up the boys from daycare, and on the drive there, I managed to call Juan while he was at work. The words barely made their way out of my mouth, but they eventually did: "Sebastian has HAE." A long pause followed. I could hear Juan start to cry. I didn't know exactly what he was thinking, but my mind reverted back to every painful attack, every visit to the hospital, and every tear shed because of my HAE. I felt guilty for giving my son something that would cause him pain. No mother ever wants to cause their child pain.
JENNY: Fortunately, there are several resources and treatments available to patients with HAE. I was able to find a treatment that helps prevent my own HAE attacks. When the time comes, Sebastian will have appropriate options available as well.
JUAN: It's been great to see Jenny live her life. She's not just been an incredible mother to David and Sebastian, but she's also been teacher Jenny to our nieces during this pandemic year. For 3 days during the week, she holds classes for them, and around the holidays, they made their own gingerbread houses, and Jenny judged them on their creativity. But she also made sure to take points off if the kids ate the building supplies.
JENNY: Don't eat the gingerbread.
JUAN: Or the marshmallows.
JENNY: I mentioned at the beginning that I don't think I would have made it this far if not for Juan being in my life. His role as a husband and caregiver, along with my management plan that includes TAKHZYRO, has changed my journey with HAE. Just asking for help and allowing him to care for me was a big step in my life. And I know that he will always be there for me and our boys. Juan goes beyond just giving care; Juan gives me hope and the possibility to live life beyond my HAE.
NARRATOR: TAKHZYRO (lanadelumab) is a prescription medicine used to prevent attacks of hereditary angioedema (HAE) in people 2 years of age and older. It is not known if TAKHZYRO is safe and effective in children under 2 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, headache, rash, dizziness, diarrhea, and muscle aches. 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 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.