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In 2014, when I was about 12, I began taking ALPROLIX®, and I’ve been taking it ever since. Since starting ALPROLIX, I have not had any spontaneous bleeds. I am grateful I have the protection from bleeds I need, and I really appreciate that I only have to infuse once a week. I go to my hemophilia treatment center (HTC) every 6 months, and my doctor and I agree that ALPROLIX continues to work for me. Please remember this is my experience, and others’ experiences may differ.
Before high school, I didn’t tell many people about my hemophilia. It’s not that I was hiding my hemophilia—I just didn’t feel like it was necessary for others to know about it. Of course, my teachers already knew in case something happened. And if I was playing rough with my friends and they got close to hurting me, I'd say, "Hey, I’ve got a condition. I need you to chill." I wasn’t ashamed of my hemophilia, but at that age, I didn’t want to risk people treating me differently. Over the years, I’ve become more open about it.
When I was 17, I began infusing on my own and really took ownership of my hemophilia management. I am grateful I only infuse once a week because I have more time to focus on what I love, like spending time with my family, working out, watching anime, playing video games, and trying new sports. My hope is that you will be encouraged to speak up for yourself and work with your doctor to find a treatment plan that works for you and your lifestyle.
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.
Meet CJ
“I usually infuse once a week. For me, it’s mix, stick, and done.”
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Alex treated on demand before making the switch to ALPROLIX prophy.
Important Safety Information and Indication
INDICATION
IMPORTANT SAFETY INFORMATION
INDICATION
ALPROLIX® [Coagulation Factor IX (Recombinant), Fc Fusion Protein] is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital Factor IX deficiency. Your healthcare provider may give you ALPROLIX when you have surgery.
IMPORTANT SAFETY INFORMATION
Do not use ALPROLIX if you are allergic to ALPROLIX or any of the other ingredients in ALPROLIX.
Tell your healthcare provider if you have or have had any medical problems, take any medicines, including prescription and non-prescription medicines, supplements, or herbal medicines, have any allergies and all your medical conditions, including if you are pregnant or planning to become pregnant, are breastfeeding, or have been told you have inhibitors (antibodies) to Factor IX.
Common side effects of ALPROLIX include headache, abnormal sensation in the mouth, and pain in your side with blood in your urine, which may be a sign of clot formation in the urinary collecting system.
Allergic reactions may occur with ALPROLIX. Call your healthcare provider or get emergency treatment right away if you have any of the following symptoms: hives, chest tightness, wheezing, difficulty breathing, or swelling of the face.
Redness to the skin at the injection site may also occur.
ALPROLIX may increase the risk of formation of abnormal blood clots in your body, especially if you have risk factors for developing blood clots. Call your healthcare provider or seek emergency care if you have symptoms of a possible abnormal blood clot, which may include: chest pain, difficulty breathing, unexpected swelling of an arm or leg with or without pain or tenderness.
Your body can also make antibodies called "inhibitors" against ALPROLIX, which may stop ALPROLIX from working properly.
These are not all of the possible side effects of ALPROLIX. Talk to your healthcare provider right away about any side effect that bothers you or does not go away, or if bleeding is not controlled using ALPROLIX.
Tell your healthcare provider if you have or have had any medical problems, take any medicines, including prescription and non-prescription medicines, supplements, or herbal medicines, have any allergies and all your medical conditions, including if you are pregnant or planning to become pregnant, are breastfeeding, or have been told you have inhibitors (antibodies) to Factor IX.
Common side effects of ALPROLIX include headache, abnormal sensation in the mouth, and pain in your side with blood in your urine, which may be a sign of clot formation in the urinary collecting system.
Allergic reactions may occur with ALPROLIX. Call your healthcare provider or get emergency treatment right away if you have any of the following symptoms: hives, chest tightness, wheezing, difficulty breathing, or swelling of the face.
Redness to the skin at the injection site may also occur.
ALPROLIX may increase the risk of formation of abnormal blood clots in your body, especially if you have risk factors for developing blood clots. Call your healthcare provider or seek emergency care if you have symptoms of a possible abnormal blood clot, which may include: chest pain, difficulty breathing, unexpected swelling of an arm or leg with or without pain or tenderness.
Your body can also make antibodies called "inhibitors" against ALPROLIX, which may stop ALPROLIX from working properly.
These are not all of the possible side effects of ALPROLIX. Talk to your healthcare provider right away about any side effect that bothers you or does not go away, or if bleeding is not controlled using ALPROLIX.
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