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Paget’s disease of bone causes bones to grow larger and weaker than normal. The disease may affect one or more bones, but does not spread from affected bones to other bones in the body. Paget’s disease can affect any bone in your body, but most people have it in their pelvis, skull, spine, or leg bones. These bones may become misshapen and, because they are weaker than normal bones, can break more easily. Some people with Paget’s disease feel pain in these bones, too.
Uncommon in people under age 40, Paget’s disease grows more common with age. The condition is more common in people of Anglo-Saxon descent in certain geographical areas, including England, the United States, Australia, New Zealand, and Western Europe. It is not common in Scandinavia, China, Japan, or India.
People with Paget’s disease often have arthritis at the same time, but they are different diseases. Sometimes Paget’s disease is confused with arthritis because the pain from Paget’s disease may be located on the part of the bone closest to a joint. So, it may feel a lot like the joint pain of arthritis. Paget’s disease can cause arthritis over time when enlarged and misshapen bones put extra stress on nearby joints. Your doctor may use several tests find out if you have Paget’s disease.
Doctors are not sure what causes the disease. Some people have hereditary Paget’s disease, which means it runs in their family and was passed down by their parents. But most people do not have any relatives with Paget’s disease. Doctors think a virus may cause Paget’s disease in some cases. They are studying different kinds of viruses to try to find ones that may cause the disease.
Paget’s disease does not affect everyone in the same way. Some people have a very mild case with few or no symptoms. Others have symptoms and complications. Pain is the most common symptom. Depending on which of your bones are affected by Paget’s disease, you might have other symptoms and complications, such as those listed below.
|If you have Paget’s disease here:||You may have some of these symptoms and complications:|
|Pelvis||Pain or arthritis in the hip joint|
|Skull||Enlarged head, hearing loss, or headaches|
|Spine||Curved spine, back pain, or damage to nerves causing problems such as tingling and numbness|
|Leg||Bowed legs, pain, or arthritis in the hip and knee joints|
Although rare, the most serious complication of Paget’s disease is bone cancer.
Yes, Paget’s disease can be treated. Finding and treating Paget’s disease early is best to prevent complications. The Food and Drug Administration (FDA) has approved several drugs to treat the disease. Doctors most often prescribe drugs called bisphosphonates. These help reduce bone pain and stop or slow down the progress of the disease.
The drugs may help prevent complications from starting or prevent them from getting worse, but they cannot correct problems that have already set in. In some cases, surgery can help. Your doctor can tell you if surgery might be a good idea for you.
Your doctor will probably monitor your progress using two tests: an x ray of your bones and a blood test to measure the level of a chemical called serum alkaline phosphatase (SAP) in your blood. The x rays will show your doctor pictures of how your bones are healing. A decrease in the amount of SAP in your blood will tell your doctor that the disease is less active and you are getting better.
There is no special diet to prevent or help treat Paget’s disease. For overall bone health, you should eat a balanced diet rich in calcium and vitamin D. The Institute of Medicine (IOM) of the National Academy of Sciences recommends 1,000 mg (milligrams) of calcium daily for adults age 19 to 50. Women over age 50 and men over age 70 should increase their intake to 1,200 mg daily. To help your body use the calcium, the IOM recommends 600 International Units (IU) of vitamin D up to age 70 and 800 IU after 70.
Exercise is important for people with Paget’s disease. Being active can help you maintain healthy bones, control your weight, and keep your joints moving. But, you should talk with your doctor before starting an exercise program to make sure what you plan to do is safe and will not put too much stress on the bones that are affected by Paget’s disease. For example, your doctor might advise you to try walking instead of jogging if you have Paget’s disease in your legs.
The doctor who diagnosed your Paget’s disease may be a specialist in the disease. If not, he or she can refer you to someone who is. Doctors who are the most experienced in treating patients with Paget’s disease are:
Sometimes other doctors may be needed, such as orthopaedists; neurologists; and ear, nose, and throat specialists. Your doctor will help you find the specialists you need.
Paget’s disease does not always run in families; however, research suggests that a close relative of someone with Paget’s disease is seven times more likely to develop the disease than someone without an affected relative. Finding and treating Paget’s disease early is important, so some doctors recommend that children and siblings of a person with Paget’s disease be tested for the disease every 2 to 3 years after the age of 40.
To screen for Paget’s disease, a doctor uses the SAP test. If the SAP level is high, suggesting that there might be Paget’s disease, the doctor can perform a test called a bone scan to learn which bones may be affected. The doctor will then order an x ray of the affected bones to make sure the diagnosis of Paget’s disease is correct.
There are many good sources of information about Paget’s disease. These include:
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This publication contains information about medications used to treat the health condition discussed here. When this publication was developed, we included the most up-to-date (accurate) information available. Occasionally, new information on medication is released.
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