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PNH Support Group FAQ (Frequently Asked Questions)



Category: Main -> TREATMENTS

Question
·  Who should treat a patient with PNH?
·  How should PNH be treated?
·  My doctor ordered a CBC, but I don’t understand what it means
·  What are the normal values for a CBC?
·  My doctor ordered a reticulocyte count. What is this?
·  Are there any other blood tests I should have done routinely?
·  My doctor wants me to have transfusions
·  Are there any complications from frequent transfusions?

Answer
·  Who should treat a patient with PNH?

If possible, see a PNH specialist—a doctor who has seen many PNH patients and conducts research into PNH. The more PNH patients the doctor has seen, the better able he or she is to detect early signs of potential problems. If this is not possible, you should at least see a hematologist—a doctor who specializes in treating blood disorders. Be aware, though, that because PNH is a very rare disease, even a hematologist may never have seen a case of PNH. It is to your advantage to have a hematologist who is willing to consult with a PNH specialist on your behalf if needed.

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·  How should PNH be treated?

Treatment for PNH depends very much on the individual patient and should only be decided upon in consultation with your doctor. Some treatments your doctor may consider are steroids such as prednisone to suppress hemolysis, blood transfusions to compensate for red blood cell loss through hemolysis, and anticoagulants to prevent clot formation. Antithymocyte globulin (ATG) is another possible treatment. It is a protein derived from horse or rabbit serum which is used to inhibit the immune system. In some cases, it helps restore normal blood cell production. A bone marrow transplant is the only cure for PNH at this time.

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·  My doctor ordered a CBC, but I don’t understand what it means

A CBC is a complete blood count. The CBC measures: • RBCs (the number of red blood cells) • WBCs (the number of white blood cells) • Hgb (the total amount of hemoglobin in the blood) • Hematocrit (the fraction of the blood composed of red blood cells) • MCV (mean corpuscular volume, which indicates the size of the red blood cells) • MCH (mean corpuscular hemoglobin) • MCHC (mean corpuscular hemoglobin concentration) • Platelet count.

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·  What are the normal values for a CBC?

Normal values fall within a range. For an adult male, normal values are: • WBC (cells/mcL) 4,500 to 10,000 • RBC (million cells/mcL) 4.7 to 6.1 • Hgb (g/dL) 13.8 to 17.2 • Hematocrit (%) 40.7 to 50.3 • Platelets (X 103 cells/mm3) 150 to 350 • MCV (femtoliter) 80 to 90 • MCH (picograms/cell) 27 to 31 • MCHC (g/dL) 32 to 36 For an adult female, normal values are: • WBC (cells/mcL) 4,500 to 10,000 • RBC (million cells/mcL) 4.2 to 5.4 • Hgb (g/dL) 12.1 to 15.1 • Hematocrit (%) 36.1 to 44.3 • Platelets (X 103 cells/mm3) 150 to 350 • MCV (femtoliter) 80 to 90 • MCH (picograms/cell) 27 to 31 • MCHC (g/dL) 32 to 36

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·  My doctor ordered a reticulocyte count. What is this?

Reticulocytes are young red blood cells. A high reticulocyte count means that your bone marrow is producing many new RBCs. A normal reticulocyte count is 0.5 to 2%.

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·  Are there any other blood tests I should have done routinely?

It is also important to monitor liver and kidney functions using routine blood tests. Be sure that your doctor explains your individual results and what they mean in your particular situation.

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·  My doctor wants me to have transfusions

Many of us in the group are transfusion-dependent because our bone marrow cannot produce red blood cells fast enough to replace those lost to hemolysis. When you should be transfused should be decided in consultation with your doctor. Many doctors recommend that patients receive irradiated, filtered, leukocyte-depleted blood. Irradiation inactivates lymphocytes, and filtering removes leukocytes. In general, these steps help keep a person who receives many transfusions from building up antibodies that will complicate future transfusions. Some people who receive transfusions experience a fever, chills, itching, and hives. These mild transfusion reactions can be prevented by taking Benadryl or Tylenol prior to the transfusion. Be sure to report any and all reactions to your health care team.

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·  Are there any complications from frequent transfusions?

Chronic red cell transfusions can lead to iron overload. Excess iron from transfused red blood cells can ac*****ulate in your body, because the body has no mechanism for removing this iron naturally (apart from menstruation). This iron can be deposited in the tissues of major organs, causing organ problems. It is important to monitor excess iron and start treatment before problems occur. Iron overload can be treated using iron chelation therapy using a drug called Desferal (deferoxamine).

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