Tools & Resources / Doctor Q&A

An Expert'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 Head of Hematology Medical 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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How do you explain inhibitors to your patients and their families?

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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 Community section.

FEIBA [Anti-Inhibitor Coagulant Complex]
Indications and Detailed Important Risk Information for Patients

INDICATIONS FOR FEIBA [Anti-Inhibitor Coagulant Complex]

FEIBA is an Anti-Inhibitor Coagulant Complex indicated for use in hemophilia A and B patients with inhibitors for:

  • Control and prevention of bleeding episodes
  • Use around the time of surgery
  • Routine prophylaxis to prevent or reduce the frequency of bleeding episodes.

FEIBA is not indicated for the treatment of bleeding episodes resulting from coagulation factor deficiencies in the absence of inhibitors to coagulation factor VIII or coagulant factor IX.

DETAILED IMPORTANT RISK INFORMATION FOR FEIBA [Anti-Inhibitor Coagulant Complex]
WARNING: EVENTS INVOLVING CLOTS THAT BLOCK BLOOD VESSELS
  • Blood clots that block blood vessels and their effects have been reported during post-marketing surveillance following infusion of FEIBA, particularly following administration of high doses and/or in patients with a risk of forming blood clots.
  • If you experience any of these side effects, call your doctor right away.

You should not use FEIBA if:

  • You had a previous severe allergic reaction to the product (reactions causing discomforts that are damaging and life threatening)
  • You have signs of development of small blood vessel clots throughout the body
  • You have sudden blood vessel clots or blocked blood vessels, (e.g., heart attack or stroke)

Events involving blood clots blocking blood vessels can occur with FEIBA, particularly after receiving high doses and/or in patients with risk factors for clotting.

Infusion of FEIBA should not exceed a dose of 100 units per kg body weight every 6 hours and daily doses of 200 units per kg of body weight. Maximum injection or infusion rate must not exceed 2 units per kg of body weight per minute.

At first sign or symptom of a sudden blood vessel clot or blocked blood vessel (e.g., chest pain or pressure, shortness of breath, altered consciousness, vision, or speech, limb or abdomen swelling and/or pain), stop FEIBA administration promptly and seek emergency medical treatment.

Allergic-type hypersensitivity reactions, including severe, sometimes fatal allergic reactions that can involve the whole body, can occur following the infusion of FEIBA. Call your doctor or get emergency treatment right away if you get a rash, hives or welts, experience itching, tightness of the throat, vomiting, abdominal pain, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

Because FEIBA is made from human plasma it may carry a risk of transmitting infectious agents, e.g., viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

The most frequent side effects observed during the prophylaxis trial were anemia, diarrhea, bleeding into a joint, signs of hepatitis B surface antibodies, nausea, and vomiting.

The serious side effects seen with FEIBA are allergic reactions and clotting events involving blockage of blood vessels, which include stroke, blockage of the main blood vessel to the lung, and deep vein blood clots.

Call your doctor right away about any side effects that bother you during or after you stop taking FEIBA.

Please see FEIBA full Prescribing Information.

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.