Q&A with a Hematologist

Tools & Resources / Doctor Q&A

A Hematologist's Opinion

"Family communication is very important."

Dr. Leonard Valentino, MD, has worked as a pediatric hematologist affiliated with several hospitals in Chicago, including Rush University Medical Center, and is now senior medical director for Shire. During his long career he's treated many hemophilia patients, including those with inhibitors. Dr. Valentino shares his advice on living with inhibitors, how to avoid bleeds, and more.14

Hematologist Dr. Leonard Valentino, MD
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Are there any special things inhibitor patients should do to take extra care?

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The safety concerns for people with inhibitors are almost the same as those for other people with hemophilia—with a little extra caution.

Changes like wearing protective pads are an easy way for families and patients to lower the risk of bleeding. Over time, patients become used to changes in playtime or sports, and the changes become normal for them.

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How do patients and caregivers deal with inhibitors?

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I think it depends a lot on a patient's age. For toddlers, protection such as knee pads, elbow pads, and soft helmets is an easy way to start lowering the risk of bleeding. Caregivers should also be careful that toddlers don't play too rough.

For kids in school, their teachers should be educated to make sure they know about their students' hemophilia and inhibitors.

Adolescents are often trying to find their place in life, and they sometimes take risks. It can be helpful for them to see role models who control their condition and still have fun hobbies and interests.

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When you would meet with patients and their families, how did you explain inhibitors?

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Sometimes we call the inhibitors 'erasers' that 'erase' the factor in a patient's therapy. At first, most families feel helpless, but then we help them see that inhibitors can be managed with the right therapy.

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How does FEIBA help patients with inhibitors?

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FEIBA is an effective treatment for hemophilia patients with inhibitors. When you have hemophilia with inhibitors, the most important thing is to stop bleeding. Everything else comes after that.

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How important is family support in dealing with inhibitors?

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Family communication is very important. Parents and children both feel more comfortable when they talk about the things they need to do. Also, kids who have hemophilia with inhibitors should spend time with peers and friends to keep from feeling alone.

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How can patients have an active life?

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I am an advocate of staying active. Patients just have to learn what to expect. Kids can play sports like swimming and golf instead of wrestling or football. Fitness is helpful and good for all of us. Hiking and yoga are other examples of sports that can help you stay active while keeping your risk of bleeding low. Not all sports, games, and exercises are right for all people. Talk to your healthcare provider or nurse to find out which activities are better for you to engage in, and what special care you should take for certain sports or exercises.

Want to find other types of support? Check out our Patient Stories section.

FEIBA [Anti-Inhibitor Coagulant Complex] Indications

What is FEIBA used for?
FEIBA (Anti-Inhibitor Coagulant Complex) is used for people with Hemophilia A or B with Inhibitors to control and prevent bleeding episodes, before surgery, or routinely to prevent or reduce the number of bleeding episodes. It is NOT used to treat bleeding conditions without inhibitors to Factor VIII or Factor IX.

Detailed Important Risk Information

When should I not take FEIBA?
You should not take FEIBA if you have had hypersensitivity or an allergic reaction to FEIBA or any of its components, including factors of the kinin generating system, if you have a condition called Disseminated Intravascular Coagulation, which is small blood clots in various organs throughout the body, or currently have blood clots or are having a heart attack. Make sure to talk to your healthcare provider about your medical history.

What Warnings should I know about FEIBA?
FEIBA can cause blood clots, including clots in the lungs, heart attack, or stroke, particularly after high doses of FEIBA or in people with a high risk of blood clots. Patients that have a risk of developing blood clots should discuss the risks and benefits of FEIBA with their healthcare provider since FEIBA may cause blood clots. FEIBA can cause hypersensitivity or allergic reactions and infusions site reactions, and these reactions can be serious. Because FEIBA is made from human plasma, it may carry the risk of transmitting infectious agents, for example, viruses, including Creutzfeldt-Jakob disease (CJD) agent, and the variant CJD agent. Although steps have been taken to minimize the risk of virus transmission, there is still a potential risk of virus transmission.

What should I tell my healthcare provider?
Make sure to discuss all health conditions and medications with your healthcare provider. If you are pregnant or are planning to become pregnant, or are a nursing mother, make sure to talk with your healthcare provider for advice on using FEIBA.

What are the side effects of FEIBA?
The most frequent side effects of FEIBA are: low red blood cell count, diarrhea, joint pain, hepatitis B surface antibody positivity, nausea, and vomiting. The most serious side effects of FEIBA include: hypersensitivity reactions, including anaphylaxis, stroke, blood clots in the lungs, and blood clots in the veins. Always immediately talk with your healthcare provider if you think you are experiencing a side effect.

What other medications might interact with FEIBA?
The use of other clotting agents with FEIBA is not recommended, for example, tranexamic acid and aminocaproic acid. Be sure to talk with your healthcare provider and pharmacist about all medications and supplements you are taking.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about FEIBA with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.feiba.com/us/forms/feiba_pi.pdf or by calling 1-800-423-2090 and selecting option 5.