Erica and James took control of his hemophilia with ALPROLIX prophy.

When James was about 9 months old, he had his first bleed. I called his doctor, who said James definitely needed to go to the emergency room.

At the ER, he needed 2 blood transfusions during our stay. That was the point when we began to give him factor IX on demand to treat his bleeds. From then until he was about a year and a half, we spent a lot of time in the hospital. When he was about a year old, we started him on prophylaxis.

For his first prophy regimen, I had to drive him to the hemophilia center every 3 days to infuse. I was in school at that time, and I wanted to start my career and have a 9-to-5 job soon. I knew I couldn’t keep taking him to the center all the time, so my husband and I decided it was time for us to learn how to do infusions at home. We learned how to give James his infusions, but we did not want him to have to have infusions every 3 days at home.

When James was 4 years old, we learned of a prophy treatment called ALPROLIX. We talked to his doctor, who explained the benefits and risks, such as the most common side effects, including allergic reactions, headaches, abnormal sensations in the mouth, and pain in the side with blood in the urine, which may be a sign of clot formation in the urinary collecting system.

His doctor agreed that ALPROLIX sounded like a good fit for James. We made the switch, and James has been using ALPROLIX since 2017. These days, James infuses every 5 days. When he gets older, we’ll discuss the possibility of infusing every 7 days. Each person’s hemophilia treatment plan may be different, so please work with your doctor to find a treatment plan that is right for you.

Our motto has always been to be proactive, not reactive, and we’ve watched James begin to proactively manage his hemophilia B. I’m so proud of him because he understands that if he wants to do his activities, he needs to infuse. We’ll continue to keep an eye on him until he’s old enough to manage his hemophilia on his own.

This is a personal account of an ALPROLIX Peer, reflecting the real-life experiences of a person diagnosed with hemophilia B who has been prescribed ALPROLIX. However, individual experiences may vary. Patient stories are not necessarily representative of what another person using ALPROLIX may experience. ALPROLIX Peers have been compensated for sharing their stories. For medical advice, please consult your own healthcare provider.