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PNH Support Group FAQ (Frequently Asked Questions)



Category: Main -> WHAT ABOUT CLOTTING?

Question
·  How dangerous is a blood clot?
·  Do all people with PNH get clots?
·  How can I predict if I will get a clot?
·  Where do clots typically form in people with PNH?
·  What are the symptoms of a clot?
·  Should I take anticoagulants to prevent a clot?

Answer
·  How dangerous is a blood clot?

Blood clots are life-threatening complications of PNH, caused when platelets adhere to each other and to vessel walls and block blood flow. Clots are the leading cause of death in people with PNH.

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·  Do all people with PNH get clots?

No. The reason for this is not known.

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·  How can I predict if I will get a clot?

At this time, there is no way to predict who will get a blood clot. That is why it is important to be aware of the symptoms of a blood clot and see your doctor immediately if you experience any of these symptoms.

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·  Where do clots typically form in people with PNH?

Common sites of clotting in people with PNH include abdominal veins in organs such as the liver, spleen, and intestines. Clots also tend to form in and around the brain. Members of our group have experienced clots in the liver, intestines, spleen, brain, heart, lungs, and legs. Several have Budd-Chiari syndrome, which is an obstruction of the hepatic vein by a blood clot, which prevents blood from flowing out of the liver and back to the heart. This blockage can cause liver damage and is an extremely serious complication of PNH.

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·  What are the symptoms of a clot?

Most people in our group who have experienced a clot suffered sudden, severe pain. Those who had clots in the brain had symptoms of a stroke—severe headache, mental confusion, tingling, and paralysis. Those having abdominal clots had extreme abdominal pain. Any sudden, severe pain or swelling is cause to seek emergency care immediately.

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·  Should I take anticoagulants to prevent a clot?

Anticoagulants such as warfarin (Coumadin) help prevent clotting by increasing the time blood takes to clot. Some doctors recommend that a person with more than 50% PNH cells take warfarin to prevent clotting; others do not recommend anticoagulation unless a person has actually experienced a clot because warfarin can cause bleeding. The decision to take anticoagulants must be made in consultation with your doctor.

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