There are several treatment options available to people living with PNH, depending on the progress and severity of the disease. The only cure for PNH is a bone marrow transplant; other treatments are supportive only but have significant benefits including a reduction in the severity of symptoms.
Most PNH patients receive one or several forms of the following treatment options.
A patient may require a blood transfusion to replace blood cells lost through haemolysis. Usually only red blood cells are transfused, as the plasma and leukocytes (white blood cells) have been removed from whole blood. Some patients need occasional transfusions after an illness, injury or surgery and other patients may be transfusion-dependent, requiring regular transfusions every few months or weeks.
Prescription medication and supplements:
Eculizumab (pronounced E-coo-liz-oo-mab) is a monoclonal antibody that reduces haemolysis, considered by PNH experts to be the only treatment proven to effectively return patient life expectancy to that of a normal person. Eculizumab is administered intravenously every 14 days and although a relatively new treatment, it has been very successful for patients with moderate to severe PNH. The treatment reduces symptoms significantly and in many cases haemoglobin levels are maintained without the need for blood transfusions.
Some patients are prescribed corticosteroids (such as prednisolone or dexamethasone) to reduce the rate of haemolysis by suppressing the body’s immune response, which in turn suppresses complement activation. Anticoagulants (for example, warfarin) may be prescribed to reduce the risk of a blood clot, known as thrombosis, particularly if a patient has already had a thrombotic event. Folic acid and iron supplements may be prescribed to assist the body’s production of blood cells to counteract the effects of haemolysis.
Many patients turn to complementary and natural therapies such as acupuncture, massage, meditation and drug-free pain management techniques to help ease the symptoms of PNH.
Natural therapies may help to reduce pain and stress. However, certain herbal medications can enhance some prescription drugs, particularly anticoagulants and others can exacerbate PNH symptoms, leading to life-threatening complications.
Since PNH is unpredictable and differs between individuals, it is important to discuss your condition in detail with your medical practitioner and treating specialist prior to taking any non-prescribed supplements.
PLEASE NOTE: This information is intended for general knowledge only and is not to be substituted for medical advice and its accuracy is not guaranteed. Please consult with your medical practitioner for further information regarding your personal circumstances.
This information has been prepared by PNHSAA Inc., is copyright protected and is used with their permission.