Frequently Asked Questions
BLEEDING DISORDERS
What are bleeding disorders?
Bleeding disorders are a group of conditions where people may bleed a lot, bleed easily, or have a hard time getting bleeding to stop. This is due to a problem in the clotting process. Bleeding can happen inside or outside the body.
It may surprise you, but problems with easy bleeding, bruising, or swollen joints can result from a bleeding disorder. You might bleed or bruise easily or have trouble getting bleeding to stop. Or you may have swelling or pain in your joints for no apparent reason.
If you think you have a bleeding disorder, learn more about it. Then talk with your doctor about your symptoms and getting tested. Diagnosis and treatment may help.
What happens in the body with a bleeding disorder?
If there is a cut or bruise, the body normally forms a clot (plug) to stop the blood from flowing. Blood clots are formed using tiny cells known as platelets and proteins called clotting factors.
In people with bleeding disorders, the blood may not have enough clotting factors, or they may not be working the way they should. These problems can keep a clot from forming, so bleeding continues.
What are the signs and symptoms of a bleeding disorder?
There are many possible symptoms of bleeding disorders. Some are easy to see because they happen outside the body, like bleeding too long from a cut in the skin. But bleeding that happens inside the body (like in a joint) may be harder to notice. Also, symptoms can range from mild (not too much worse than normal) to severe (much worse than normal).
Symptoms in anyone can include easy bruising, nosebleeds, joint swelling or pain, gum bleeding, excessive bleeding after injury, and bleeding in the brain.
Symptoms in women can include heavier or longer bleeding during periods than most other women (heavy menstrual bleeding), and bleeding complications during pregnancy or childbirth.
Symptoms in newborns can include umbilical cord (belly button) or circumcision bleeding that does not stop normally, or brain or stomach bleeding.
How severe are bleeding disorder symptoms?
Symptoms of a bleeding disorder can range from mild (not too much worse than normal) to severe (much worse than normal).
How might symptoms of a bleeding disorder show up in women?
Symptoms in women can include heavier or longer bleeding during periods than most other women (heavy menstrual bleeding), and bleeding complications during pregnancy or childbirth.
Women can also have symptoms that can occur in anyone: easy bruising, nosebleeds, joint swelling or pain, gum bleeding, excessive bleeding after injury, and bleeding in the brain.
Can someone have pain with a bleeding disorder?
Yes. People with bleeding disorders sometimes have pain with their bleeding symptoms. The pain can happen for different reasons, like swelling from bleeding in a joint, or bruising. If you have bleeding disorder symptoms, it is important to tell your doctor about all your symptoms, so they understand how much bleeding affects you.
Can symptoms of a bleeding disorder show up in a newborn baby?
Yes. Symptoms in newborns can include umbilical cord (belly button) or circumcision bleeding that does not stop normally, or brain or stomach bleeding.
What does “factor deficiency” mean?
Some bleeding disorders are caused by factor deficiencies. That means there is not enough of one or more of the clotting factors in the blood.
- There are many different clotting factors and each has its own number. The number is usually written using Roman numerals, like factor II (two), factor V (five), or factor X (ten).
- For example, someone with factor X deficiency doesn’t have enough factor 10 in their blood.
Do you have a checklist of symptoms for bleeding disorders?
Yes. This Symptom Screener for bleeding disorders is a checklist you can download. Print the screener, mark your answers, and bring it with you to your next doctor visit to talk with your doctor about your bleeding symptoms.
Can someone have a bleeding disorder and not know it?
Yes, someone may not know their symptoms are caused by a bleeding disorder. Some symptoms are easy to see because they happen outside the body, like bleeding too long from a cut in the skin. But bleeding that happens inside the body (like in a joint) may be harder to notice. Also, symptoms can range from mild (not too much worse than normal) to severe (much worse than normal).
How do I know if I have a bleeding disorder?
If you think you have a bleeding disorder, talk with your doctor. Your doctor may ask about your symptoms, medical history, and family history of bleeding problems. You can ask your doctor about blood tests to check for bleeding disorders, and treatment that can help you manage bleeding.
Early diagnosis of bleeding disorders is important. Bleeding disorders can cause serious or life-threatening problems, such as stroke or miscarriage. Work with your doctor so you can be tested to understand the cause of your bleeding.
You can take some steps now to help your doctor help you:
- Answer a few symptom questions and save, print, or email your answers.
- Show the questions and answers to your doctor.
- Ask your doctor about getting tested for a bleeding disorder.
Can I get tested for a bleeding disorder?
Yes. You can ask your doctor about blood tests to check for bleeding disorders.
Early diagnosis of bleeding disorders is important. Bleeding disorders can cause serious or life-threatening problems, such as brain bleeds or miscarriage. Work with your doctor so you can be tested to understand the cause of your bleeding.
How are bleeding disorders treated?
Bleeding disorders cannot usually be cured. But many bleeding disorders can be treated. Treatment depends on the bleeding disorder. It may include medicines that replace clotting factors that are missing in the blood.
The type of treatment needed depends on how often you have symptoms and how severe they are:
Routine treatment (prophylaxis): Some bleeding disorders can be treated with routine treatment. This means you take a medicine on a regular schedule as directed by your doctor to help prevent bleeds. This may be the right choice if your symptoms are regular, affect your daily activities, cause pain, or if you have very severe (bad) bleeds.
Treatment as needed (on-demand): Sometimes treatment is given as needed for an accident, injury, or unexpected bleeding. Treatment as needed can help to stop a bleed after it starts. This may be the right choice if you bleed very rarely, if bleeding does not usually affect your daily activity, or if your bleeding is not severe.
Treatment with surgery: In some cases, treatment may be given with surgery to help prevent bleeding. This includes dental surgery or other procedures where bleeding is possible. This may be the right choice if you might bleed more because of surgery, even if you don't have a lot of bleeding symptoms.
HEREDITARY FACTOR X DEFICIENCY
What is factor X? (spoken as “factor 10”)
Factor X is normally present in the human body and works by helping with blood clotting to stop bleeding or prevent unusual bleeding. Bleeding can happen inside the body (for example, in a joint) or on the outside of the body (as with a skin cut).
What is factor X deficiency? (spoken as “factor 10 deficiency”)
Factor X deficiency is a rare bleeding disorder caused by having too little of a clotting factor called factor X in the blood. Or sometimes, people have enough factor X but it does not work the way it should. Hereditary factor X deficiency is factor X deficiency that runs in families, meaning it can be passed down from parents to a child.
Factor X works by helping with blood clotting to stop bleeding or prevent unusual bleeding. Bleeding can happen inside the body (for example, in a joint) or on the outside of the body (as with a skin cut). People with factor X deficiency may bleed more than normal and have a hard time getting bleeding to stop.
What is hereditary factor X deficiency?
Hereditary factor X deficiency is factor X deficiency that runs in families, meaning it can be passed down from parents to a child.
How common is hereditary factor X deficiency?
Hereditary factor X deficiency affects about 1 in a million people. In the United States, that means more than 300 people may have factor X deficiency.
What are the symptoms of factor X deficiency?
Symptoms of factor X deficiency sometimes can be confusing or hard to understand. For example, symptoms may include joint swelling and pain that are caused by bleeding inside a joint.
Symptoms in anyone can include easy bruising, nosebleeds, joint swelling or pain, gum bleeding, excessive bleeding after injury, and bleeding in the brain.
Symptoms in women can include heavier or longer bleeding during periods than most other women (heavy menstrual bleeding), and bleeding complications during pregnancy or childbirth.
Symptoms in newborns can include umbilical cord (belly button) or circumcision bleeding that does not stop normally, or brain or stomach bleeding.
Can you have pain with hereditary factor X deficiency?
Yes. People with bleeding disorders sometimes have pain with their bleeding symptoms. The pain can happen for different reasons, like swelling from bleeding in a joint, or bruising. If you have bleeding disorder symptoms, it is important to tell your doctor about all your symptoms, so they understand how much bleeding affects you.
Can someone have hereditary factor X deficiency and not know it?
Yes, someone may not know their symptoms are caused by a bleeding disorder such as hereditary factor X deficiency. Some symptoms are easy to see because they happen outside the body, like bleeding too long from a cut in the skin. But bleeding that happens inside the body (like in a joint) may be harder to notice. Also, symptoms can range from mild (not too much worse than normal) to severe (much worse than normal).
How do I know if I have hereditary factor X deficiency?
Talk with your doctor if you think you may have factor X deficiency. Your doctor may ask about your symptoms, medical history, and family history of bleeding problems.
- A simple blood test is all that is needed to determine if you have hereditary factor X deficiency.
- Early diagnosis of bleeding disorders is important. Bleeding disorders like factor X deficiency can cause serious or life-threatening problems, such as brain bleeds or miscarriage. They can also cause a lifetime of discomfort and pain if not treated.
If I have hereditary factor X deficiency, should my family get tested?
Yes, talk with your doctor about testing your family for factor X deficiency. Someone may not know their symptoms are caused by a bleeding disorder such as hereditary factor X deficiency. Or, they may not have symptoms but can still be a carrier for factor X deficiency.
How is hereditary factor X deficiency treated?
Hereditary factor X deficiency is treated by replacing the factor X that is missing in the body. How often treatment is needed depends on how often you have symptoms and how severe they are.
Routine treatment (prophylaxis) means you take a medicine (factor X) regularly as directed by your doctor to help prevent bleeding before it happens. This means factor X is kept at near-normal blood levels between doses. This may be the right choice if your symptoms are regular, affect your daily activities, are painful, or if you have severe (bad) bleeds.
Treatment as needed (on-demand): You may decide to treat each time you bleed. Treatment as needed can help to stop a bleed after it starts. Factor X is given to raise levels to help stop bleeding. This may be the right choice if you bleed very rarely, if bleeding does not affect your daily activity, or if your bleeding is not severe.
Treatment with surgery: Treatment may be given with surgery to help prevent bleeding. This may be the right choice even if you bleed rarely or your bleeding is not severe, or your daily activity is not usually affected by it. After surgery, patients can change to routine therapy, or treatment as needed.
What medicines are approved by the US Food and Drug Administration (FDA) to treat factor X deficiency?
COAGADEX is the first and only treatment approved by FDA specifically for hereditary factor X deficiency. COAGADEX contains factor X to replace the factor X that is missing in people with hereditary factor X deficiency. The factor X in COAGADEX helps the body form clots to stop or prevent excessive bleeding.
Are there any real-life examples of people who have hereditary factor X deficiency?
Yes, visit our COAGADEX Patient Stories page. Read stories from Olivia, Fernando, and Isabelle about living with factor X deficiency. Carly and Leah share their stories as parents of children with factor X deficiency.
COAGADEX
What is COAGADEX?
COAGADEX is the first and only treatment specifically for hereditary factor X deficiency. COAGADEX contains factor X to replace the factor X that is missing in people with hereditary factor X deficiency. The factor X in COAGADEX helps the body form clots to stop or prevent excessive bleeding.
How is COAGADEX given?
COAGADEX can be taken in different ways—routinely (prophylaxis) to help prevent bleeding, with surgery to help prevent bleeding, or as needed if bleeding starts.
COAGADEX is given as a liquid through a needle in a vein. This is called an intravenous, or IV, infusion.
- At first, COAGADEX is often given in a doctor’s office or infusion center. A nurse will prepare the dose and give the medicine to you.
- In some cases, a nurse may be able to come to your home to give you COAGADEX. If interested, you or your caregiver may be able to learn how to give COAGADEX yourself. A nurse will provide training. It may take a few doses before you feel ready to give COAGADEX without the nurse.
How is COAGADEX used for routine treatment (prophylaxis)?
For routine treatment or “prophylaxis”, COAGADEX is given at regular times as directed by a doctor to help prevent bleeds. For example, some patients take it 2 times a week.
- COAGADEX is usually taken at home.
- Factor X levels are kept at near normal levels all the time to help prevent bleeding before it happens.
- Factor X levels should be monitored by a doctor and doses should be adjusted accordingly.
How is COAGADEX used for on-demand treatment?
For as needed or “on-demand” treatment, COAGADEX is given as needed for an accident, injury, or unexpected bleeding.
- Can be given in a hospital or clinic, or at home.
- Factor X levels are increased to help stop bleeding.
How is COAGADEX used for surgery?
When COAGADEX is given with surgery, it may be given before and after surgery. When given with surgery, COAGADEX is often given in a hospital or clinic.
Factor X levels are increased to help prevent bleeding during and after surgery. After surgery, patients can change to routine therapy, or treatment as needed.
How often is COAGADEX given?
How often COAGADEX is given depends on how it is being prescribed.
COAGADEX can be taken in different ways—
- Routinely to help prevent bleeding (“prophylaxis”) – Twice weekly dosing is recommended
- With surgery to help prevent bleeding – May be given before and after surgery
- As needed if bleeding starts (“on-demand”) – May be given if bleeding starts
How long does it take for one treatment with COAGADEX?
Dosing and treatment time can vary for each person. For an average adult, COAGADEX given as prophylaxis can be infused in less than 5 minutes.
How do I reconstitute (mix) COAGADEX?
Learn how to reconstitute or mix COAGADEX by following the video instructions on this website. You can also read the COAGADEX package instructions on how to reconstitute or mix COAGADEX.
Can I give COAGADEX to myself? How can I learn to do that?
At first, COAGADEX is often given in a doctor’s office or infusion center. A nurse will prepare the dose and give the medicine to you. COAGADEX is given as a liquid through a needle in a vein. This is called an intravenous, or IV, infusion.
- In some cases, a nurse may be able to come to your home to give you COAGADEX.
- If interested, you or your caregiver may be able to learn how to give COAGADEX yourself. A nurse will provide training. It may take a few doses before you feel ready to give COAGADEX without the nurse.
- To learn more, call us to speak with a Power of X Patient Liaison at (844) 424–1010 (toll-free), Monday through Friday 9 am to 7 pm Eastern Time. Or complete the Online Form to connect with us.
What if I have more questions about COAGADEX?
- Call the POWER of X program toll-free at (844) 424-1010, Monday through Friday, from 9 am to 7 pm Eastern Time.
- Or complete the online form to ask your questions.
SUPPORT AND RESOURCES
What is the POWER of X program?
BPL’s POWER of X program is a free program that supports people with hereditary factor X deficiency and their caregivers. Our Patient Liaisons are here to support you during your entire COAGADEX journey.
Here are just a few of the ways our POWER of X Patient Liaisons can help you:
- Information on hereditary factor X deficiency and COAGADEX
- Connection with others in the factor X community
- Access to COAGADEX
Note: Medical advice can only be provided by your health care team. Contact your doctor or another member of your health care team for any questions or concerns about your health and/or treatment.
How do I enroll in the POWER of X program?
You can choose to enroll online or by phone:
- Complete the online form to connect with us about the POWER of X program.
- Or, call toll-free: (844) 424-1010 (Monday through Friday 9 am to 7 pm Eastern Time)
Is there copay support or insurance coverage for COAGADEX?
Call the POWER of X program to ask questions about copay support or insurance coverage for COAGADEX. Also see the information below.
COAGADEX Copay Support Program
If you have a prescription for COAGADEX and are having a hard time paying for it, BPL may be able to help.Our COAGADEX Copay Support Program can help cover out-of-pocket expenses for your COAGADEX prescription. Some restrictions apply. To see if you qualify, register here.
Insurance coverage for COAGADEX
Register here if you have any questions about:- Insurance coverage
- Prior authorizations and appeals (sometimes needed to approve coverage of COAGADEX)
Are there any videos I can watch?
Yes. Learn more by viewing the videos available on this website:
Is there a brochure I can print to learn more about COAGADEX and factor X deficiency?
Yes. Just download and print the COAGADEX and Hereditary Factor X Deficiency Brochure on this website.
What organizations are helpful for patients with bleeding disorders?
Click to view several national and international organizations that have helped many patients with bleeding disorders.
What specialty pharmacies carry COAGADEX?
View all specialty pharmacies that carry COAGADEX.
To ask questions or learn more, call us to speak with a Power of X Patient Liaison at at (844) 424–1010 (toll-free), Monday through Friday 9 am to 7 pm Eastern Time. Or complete the Online Form to connect with us.
What is a specialty pharmacy?
COAGADEX is available exclusively through specialty pharmacies. A specialty pharmacy is a pharmacy that provides medicines for rare or complex health problems. The specialty pharmacy will interact directly with you to help you get your COAGADEX supplies. They will also answer any questions about COAGADEX and how to take it.
The specialty pharmacy will provide nurses to help you take your COAGADEX in a clinic or at home. Your pharmacy may contact you directly or speak with your doctor as needed, to make sure you are receiving your COAGADEX doses as prescribed.
What is a hemophilia treatment center (HTC)?
Many patients with factor X deficiency and other bleeding disorders seek treatment at a hemophilia treatment center (HTC). More than 140 HTCs are found across the US. They provide high-quality care for people with all types of bleeding disorders. Learn more about HTCs at the US Centers for Disease Control and Prevention HTC page.
How do I find a hemophilia treatment center (HTC) near me?
You can find an HTC near you by completing the HTC Directory form at the US Centers for Disease Control website. Talk with your doctor to learn more about HTCs.
How can I (or my doctor) contact BPL with questions?
For questions about COAGADEX treatment or hereditary factor X deficiency, you or your doctor can call:
The POWER of X program
Toll-free (844) 424-1010
Monday through Friday, 9 am to 7 pm Eastern Time
Indications and Usage for COAGADEX
COAGADEX, a plasma-derived blood coagulation factor X concentrate, is indicated in adults and children with hereditary factor X deficiency for:
- Routine prophylaxis to reduce the frequency of bleeding episodes
- On-demand treatment and control of bleeding episodes
- Perioperative management of bleeding in patients with mild, moderate and severe hereditary factor X deficiency
Contraindication for COAGADEX
COAGADEX is contraindicated in patients who have had life-threatening hypersensitivity reactions to COAGADEX.
Important Safety Information for COAGADEX
Allergic type hypersensitivity reactions, including anaphylaxis, are possible with COAGADEX. If symptoms occur, patients should discontinue use of the product immediately, contact their physician, and administer appropriate treatment.
The formation of neutralizing antibodies (inhibitors) to factor X is a possible complication in the management of individuals with factor X deficiency. Carefully monitor patients taking COAGADEX for the development of inhibitors by appropriate clinical observations and laboratory tests.
COAGADEX is made from human plasma and may contain infectious agents, e.g. viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent. No cases of transmission of viral diseases, vCJD or CJD, have been associated with the use of COAGADEX.
In clinical studies, the most common adverse reactions (frequency ≥5% of subjects) with COAGADEX were infusion site erythema, infusion site pain, fatigue and back pain.
