Treatment:

Steroids or other drugs that suppress the immune system may help slow the break down of red blood cells. Blood transfusions may be needed. Supplemental iron and folic acid are provided. Blood thinners may also be needed to prevent clot formation.

Soliris (eculizumab) is a new drug used to treat PNH. It blocks the breakdown of red blood cells.

Bone marrow transplantation can cure this disease.

All patients with PNH should receive preventative vaccinations against certain types of bacteria to prevent infection. Ask your doctor which vaccinations are right for you.

Expectations (prognosis):

The outcome varies. Most people survive greater than 10 years after their diagnosis. Death can result from complications such as blood clot formation (thrombosis) or bleeding.

In rare cases, the abnormal cells may decrease over time.

Complications:

• Acute myelogenous leukemia
• Anemia
• Blood clots
• Death
• Iron deficiency anemia
• Myelodysplasia

Calling your health care provider:

Call your health care provider if you find blood in your urine, if symptoms worsen or do not improve with treatment or if new symptoms develop.