Patient education: Paget disease of bone (The Basics)

What is Paget disease of bone? — Paget disease of bone is a disorder that causes problems with how the bones grow. It most often affects people older than 55.

In healthy people, old bone breaks down and new bone replaces it. This happens slowly throughout life. In people with Paget disease (also called "Paget's disease") of bone, parts of some bones do not break down and regrow in the normal way. This can cause some of the bones to grow too big, form abnormal shapes, and be weaker than regular bones.

Paget disease can affect different bones in different people. The bones most often affected are the skull, spine, pelvis, and arm and leg bones. Paget disease does not spread from one bone to another.

There is also a type of breast cancer called Paget disease of the breast. This is not related to Paget disease of bone.

What are the symptoms of Paget disease of bone? — Most people with Paget disease do not notice any symptoms. But some people do. Symptoms can include:

●Pain – Bones affected by Paget disease sometimes hurt. The disease can also cause other problems, such as arthritis (when the affected bone is near a joint, such as the knee or hip), weakness, or numbness (if the bone puts pressure on a nerve).

●Changes in appearance – In some cases, the bones change so much that the changes are noticeable from the outside. For example, if the leg bones are affected, the changes might cause a limp or make the legs look curved. Paget disease of the skull can make the head grow bigger than normal.

●Fractures – Bones affected by Paget disease are weaker than normal. This makes them more likely to fracture (break).

●Hearing loss – In some cases, Paget disease can affect the skull bone near the ears. This can lead to hearing loss.

Should I see a doctor or nurse? — Yes. If you have pain or other problems with your bones, your doctor or nurse can help figure out what is going on.

Is there a test for Paget disease of bone? — Yes. There are a few different tests that your doctor or nurse can use to tell if you have Paget disease:

●Blood test – People with Paget disease usually have a higher-than-normal level of a specific protein (called "alkaline phosphatase") in the blood. A blood test can show this.

●Imaging tests – Imaging tests create pictures of the inside of the body. Bone scans and X-rays are 2 types of imaging tests that doctors use to check for bone problems.

How is Paget disease of bone treated? — Many people with Paget disease do not need any treatment. But there are treatments that can help people who have symptoms. Even if you do not have any symptoms, your doctor might suggest treatment to keep your Paget disease from causing other problems.

Treatments can include:

●Medicines – There are medicines that can help prevent some of the bone problems caused by Paget disease. Some of these medicines come as pills, while others come as shots. If you start taking these medicines, your doctor or nurse will do blood tests every few months to see if they are working.

If you take these medicines, it is important to get plenty of calcium and vitamin D. Your doctor or nurse can help you figure out how much you need. Lots of foods and drinks have calcium and vitamin D (figure 1).

●Treatments for other problems – Some people with Paget disease also have related problems, such as arthritis or pinched nerves. If treating your Paget disease does not help with these problems, your doctor or nurse might suggest pain medicines, such as ibuprofen (sample brand names: Advil, Motrin) or acetaminophen (sample brand name: Tylenol). Your doctor or nurse might also suggest that you use a cane or try physical therapy.

●Surgery (to replace a knee or hip) can also help some people with severe arthritis.

Is there anything I can do on my own to feel better? — Yes. It might help to eat a healthy diet with plenty of calcium and vitamin D. Getting regular exercise can also help strengthen bones. Your doctor or nurse can help you figure out what kinds of exercise are safe for you.

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