Q. How is Paget's disease usually diagnosed?
A.
Bones affected with Paget's disease have a distinct appearance in x-rays. Sometimes, the patient's doctor is alerted to the possibility of Paget's disease when a blood test reveals an elevated level of serum alkaline phosphatase. In such cases, more specific tests may be done.
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Q. What is serum alkaline phosphatase (SAP) and what does it mean if the level is higher than normal?
A.
Serum alkaline phosphatase (SAP) is a chemical (enzyme) that is produced by bone cells called osteoblasts. Too much serum alkaline phosphatase is produced by bone with Paget's disease. An elevated alkaline phosphatase level indicates abnormal bone cell activity that can suggest Paget's disease. In addition to being used as a way of discovering Paget's disease, the serum alkaline phosphatase level is also used by the physician to monitor a patient's response to therapy. If a high serum alkaline phosphatase level is significantly reduced after a period of therapy, that therapy is working for that patient.
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Q. Why is a bone scan sometimes suggested?
A.
Bone scans are useful in determining the extent and activity of the disease. Bone scans involve less radiation than x-rays and are also more sensitive than x-rays in detecting areas of bone affected by Paget's disease. In a bone scan, a safe amount of a radioactive substance is injected and circulates through the bloodstream. This substance then localizes to areas where there is Paget's disease. If a bone scan suggests Paget's disease, the affected bone or bones should be x-rayed to confirm the diagnosis.
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Q. What is the prognosis for patients with Paget's disease?
A.
The outlook for patients with Paget's disease is generally good, particularly if treatment is given before major complications have occurred. The course of Paget's disease varies greatly and may range from completely stable to rapid progression. In general, Paget's disease symptoms progress slowly in affected bones, and there is usually no spread to normal bones. Paget's disease treatment can control the disease and lessen symptoms but is not a cure. When untreated, Paget's disease can cause serious complications, depending on which bones are affected and how long the disease is present.
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Q. Is Paget's disease a fatal disease?
A.
No, Paget's disease is rarely fatal. Sarcoma, a form of bone cancer, is an extremely rare complication that occurs in less than 1 percent of all Paget's disease patients.
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