PAGET'S DISEASE OF BONE

General Information

DEFINITION--A gradual, progressive bone disease, characterized by bones breaking down and regenerating excessively. The new bone is fragile and weak. It is not cancerous.

BODY PARTS INVOLVED--Bones of the skull, spine, legs, collar bone and pelvis.

SEX OR AGE MOST AFFECTED--Both sexes, but most common in men over age 40.

> Affected bones are chronically painful--especially at night--

enlarged, misshapen, tender, and the skin over them is warm

• Movement is impaired.
• Spinal curvature compresses sensory nerves.
• Fractures occur from minor trauma and heal slowly with deformity.

CAUSES--Unknown, although a virus may be involved.

RISK INCREASES WITH--Family history of Paget's disease.

HOW TO PREVENT--No specific preventive measures.

What To Expect

DIAGNOSTIC MEASURES--

• Your own observation of symptoms.
• Medical history and exam by a doctor.
• X-rays of affected bones.
• Laboratory blood and urine studies to determine levels of serum alkaline phosphatase and urinary calcium.
• Possibly CT scan or MRI (See Glossary for both). Hearing and vision testing if skull is involved.

APPROPRIATE HEALTH CARE

• Self-care after diagnosis.
• Doctor's treatment.
• Most people do not require treatment other than occasional pain medication.
• Rarely, splinting may be needed for severely affected areas to prevent fractures.
• Bone surgery (sometimes) to correct deformities or treat secondary arthritis.

POSSIBLE COMPLICATIONS

• Visual impairment or hearing loss caused by the skull pressing on the brain.
• High blood pressure; kidney stones; gout; bone cancer.
• Congestive heart failure. The heart is strained by the greatly increased blood flow through diseased bones.
• Misdiagnosis of Paget's disease as an overactive parathyroid gland or spread of cancer from the prostate gland, breast or bone marrow.

PROBABLE OUTCOME--This condition is currently considered incurable. However, symptoms can be relieved or controlled. The disease has a pattern of remissions and flare-ups that become progressively worse. Sometimes adjacent joints become involved. Life expectancy is reduced, but most persons live with the disease for at least 10 to 15 years. Scientific research into causes and treatment continues, so there is hope for increasingly effective treatment and cure.

How To Treat

GENERAL MEASURES--

• Use heat to relieve pain, including hot compresses, hot soaks or heat lamps.
• If you don't have a firm bed, place 3/4-inch plywood under your mattress.
• Accident-proof your home as much as possible. Avoid throw rugs and slippery floors. Install hand rails next to the tub.
• Hearing aid may be useful if hearing loss occurs.

MEDICATION--

• Your doctor may prescribe male and female hormones, fluoride, pain relievers, calcitonin injections, etidronate or cytotoxic drugs. All relieve pain, but none cure the disease.
• Try aspirin or non-steroidal anti-inflammatory drugs for pain.

ACTIVITY--

• Rest in bed during active phases. Move or turn often to prevent pressure sores. Resume your normal activities during remissions.
• Avoid excessive physical stress on bones.

DIET--No special diet.

Call Your Doctor If

• You have symptoms of Paget's disease.
• The following occurs during treatment: Fever of 101F (38.3C) or higher. Unbearable pain. Weight loss. Worsening symptoms.
• New, unexplained symptoms develop. Drugs used in treatment may produce side effects.