Paget's Disease of Bone

What is Paget's disease of bone?

Paget's disease is a disorder that causes enlarged and deformed bones. It occurs most often in the spine, skull, pelvis, thighs, and lower legs. Normal bone constantly replaces itself, which is why we always need calcium and vitamin D. In Paget's disease bone breaks down and replaces itself too quickly, resulting in weak bones. This can cause bone pain, arthritis, and broken or deformed bones.

How does it occur?

The cause of Paget's disease is not known. The cause may be a viral infection that you have had for many years before symptoms appear. You are at greater risk if you have a family member who has had the disease.

Paget's disease is usually diagnosed in people over 40 years old. It is more common as people get older. It occurs more in the northern US.

What are the symptoms?

Bone pain is the most common symptom. It often hurts most in areas near the joints. The pain is generally worse at night. You may have joint pain or stiffness if there is damage to the cartilage of your joints.

Your bones may break easily. Healing is difficult because the bones are not able to make normal, strong bone.

When Paget's disease affects your skull or spine, the abnormal bone growth may put pressure on nerves. The pressure can cause headaches, hearing loss, neck pain, or even blindness.

If you have a mild case, you may not know you have Paget's disease because you may have no symptoms.

How is it diagnosed?

Your healthcare provider will ask about your symptoms and examine you. Tests may be done, for example:

• An X-ray, CT scan, or MRI scan will show abnormal bone, that is, increased bone density in some areas even though the bones are weaker, with thickening, bowing, and overgrowth.
• A blood test may show high levels of a substance called alkaline phosphatase, which may indicate Paget's disease.
• If the disease is affecting your skull, you may have vision and hearing tests.

How is it treated?

It is important to start treatment early, before you have major changes in your bones. The goal of treatment is to control pain, avoid complications, relieve nerve compression, and keep bones from becoming deformed.

Currently, several kinds of medicines are used to treat Paget's disease. These include:

• alendronate (Fosamax)
• etidronate (Didronel)
• gallium nitrate (Ganite)
• intranasal calcitonin-salmon (Miacalcin, Calcimar)
• pamidronate (Aredia)
• plicamycin (Mithracin)
• risedronate (Actonel)
• tiludronate (Skelid).

Acetaminophen or nonsteroidal anti-inflammatory drugs (NSAIDS), such as aspirin or ibuprofen, may help relieve pain. NSAIDs may cause stomach bleeding and other problems. These risks increase with age. Read the label and take as directed. Unless recommended by your healthcare provider, do not take for more than 10 days for any reason.

You may need surgery. There are different surgeries that may be recommended. Surgery can help some fractures to heal properly with the placement of rods or plates to support the healing bone. If you are severely disabled by the disease and medicines and physical therapy are no longer helpful, your healthcare provider may recommend joint replacement of the hips or knees. Surgery to realign the affected bones (osteotomy) may help painful weight-bearing joints, especially the knees.

How long will the effects last?

Treatment can control Paget's disease and lessen symptoms, but it is not a cure. Symptoms progress slowly, and, once treatment is begun, the disease generally does not spread to bones that are still normal and unaffected.

Paget's disease may lead to other medical conditions, including:

• arthritis
• hearing loss
• heart valve problems
• high blood pressure
• high levels of calcium in the blood
• irregular heartbeat
• increased head size
• bowing of the legs
• curvature of the spine
• kidney stones
• loosened teeth
• loss of vision
• nervous system problems
• sarcoma (bone cancer).

How can I take care of myself?

Early diagnosis and treatment is important. If someone in your family has Paget's disease, and you are over 40 years old, have an alkaline phosphatase blood test every 2 or 3 years to check for disease.

Things that you can do to help relieve symptoms include:

• using a heating pad set at low to relieve pain
• sleeping on a firm bed
• accident proofing your home to prevent falling or injury
• maintaining a healthy weight
• eating a healthy diet
• exercising with the guidance of your healthcare provider.

Try to make your home safe from accidents to prevent falling or injury.

Exercise is very important in keeping your bones strong, your weight under control, and your joints flexible. You should avoid putting stress on the injured bones. Discuss any exercise program with your healthcare provider before you begin.

People with Paget's disease are more likely to have kidney stones. To help prevent kidney stones, make sure that you drink plenty of water every day.

For more information, contact:

Paget Foundation
Phone: 800-23-PAGET
Web site: http://www.paget.org

How can I help prevent Paget's disease?

Because the cause of Paget's disease is not understood, a way to prevent it is not known.