Paget's Disease of Bone

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KEY POINTS

• Paget's disease results in weak bones that may grow too big or in the wrong shape. This can cause bone and joint pain and make it easier for bones to break.
• Treatment is focused on slowing bone breakdown and helping to relieve pain, and treatment may include medicine or surgery.
• Eat a healthy diet, drink plenty of water, and ask your healthcare provider if there are any limits on your exercise. If you smoke, try to quit. If you drink alcohol, ask your healthcare provider how much is safe for you to drink.

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What is Paget's disease of bone?

Paget's disease causes enlarged and deformed bones. Your body is always making new bone to replace old bone. When you have Paget's disease, bone breaks down and replaces itself too quickly, resulting in weak bones that may grow too big or in the wrong shape. This can cause bone and joint pain and make it easier for bones to break.

Paget's disease is usually diagnosed in people over 40 years old. It occurs more in the northern US and in people of northern European heritage.

What is the cause?

The exact cause of Paget's disease is not known. It may be related to genes that you inherit from your parents or from a viral infection you had early in life. You are at greater risk if you have a family member who has had the disease.

What are the symptoms?

Most people do not have symptoms. Paget’s may be found after tests are done for another reason.

More severe disease can cause problems in the skull, collarbone, spine, pelvis, thighs, and lower legs. Symptoms may include:

• Bone pain that is generally worse at night
• Stiff or painful joints
• Bones that break easily and don’t heal properly
• Headaches, hearing loss, neck pain, or even blindness caused by pressure on the nerves from abnormal bone growth of the skull

Over time, Paget's disease may lead to:

• Increased head (skull) size
• Bowing of one or both legs
• Curvature of the spine
• Nerve problems if growing bone presses on one or more nerves--for example, shooting pains in the legs from abnormal bone in the spine pressing on a nerve
• Heart failure
• Bone cancer, which is rare

How is it diagnosed?

Your healthcare provider will ask about your symptoms and medical history and examine you. Tests may include:

• Blood tests
• X-rays of the bones where you are having symptoms
• Bone scan, which uses a radioactive chemical to look at your bones
• Vision and hearing tests if the disease is affecting your skull

How is it treated?

There is no cure for Paget’s disease, but early diagnosis and treatment is important. Treatment is focused on slowing bone breakdown and can help control pain, relieve nerve pressure, and keep bones from getting deformed.

Several kinds of medicines may be prescribed to slow bone loss and help prevent broken bones. Nonprescription pain medicine may help relieve pain.

You may need surgery.

• Surgery to put in rods or plates to support healing bone can help some fractures heal.
• Surgery to reshape and realign damaged bones may help relieve pain and keep your joints working properly.
• If Paget’s disease has severely damaged a joint, you may need surgery to replace your joint with an artificial joint.

How can I take care of myself?

Follow the full course of treatment prescribed by your healthcare provider. In addition:

• Use a heating pad or hot water bottle to help relieve pain. Cover the hot water bottle with a towel or set the heating pad on low so you don’t burn your skin. Don’t go to sleep with a heating pad plugged in.
• Try to keep a healthy weight. If you are overweight, lose weight.
• Eat a healthy diet.
• Exercise is very important for keeping your bones strong, your weight under control, and your joints flexible. However, you should avoid putting stress on injured bones. Discuss any exercise program with your healthcare provider before you start. You may need a referral to a physical therapist for help with creating the right exercise program for you.
• Drink plenty of water every day to help prevent painful kidney stones. People with Paget's disease are more likely to have kidney stones.
• If you smoke, try to quit. Talk to your healthcare provider about ways to quit smoking.
• If you want to drink alcohol, ask your healthcare provider how much is safe for you to drink.
• Try to make your home safe from accidents to prevent falls and injury. For example, install handrails in the bathroom and remove loose rugs. Keep items you could trip over--like electric cords, oxygen tubing, and clothing--off the floor or out of common walking areas.

Ask your healthcare provider:

• How and when you will get your test results
• How long it will take to recover from your present symptoms
• If there are activities you should avoid and when you can return to your normal activities
• What symptoms or problems you should watch for and what to do if you have them

Make sure you know when you should come back for a checkup. Keep all appointments for provider visits or tests.

If you have not been diagnosed with Paget’s disease, but someone in your family has the disease and you are over 40 years old, talk to your healthcare provider about getting a blood test every 2 or 3 years to check for the disease.

You can get more information from:

• NIH Osteoporosis and Related Bone Diseases
  800-624-BONE (2663)
  http://www.niams.nih.gov/Health_Info/Bone/Pagets/