What is Paget's disease?

Paget's disease is a chronic bone disorder where your bones become weakened and deformed. It can develop in any bone in your body, but commonly affects the bones of your:

• skull
• pelvis
• spine
• upper arm
• thighs and legs

Your bones are a living tissue. They are constantly being broken down and replaced. Paget's disease occurs when something goes wrong with this process, and your bones break down more quickly than normal. The new bone that develops is weaker than normal healthy bone tissue.

Paget's disease mainly affects people over 55 years old. It most commonly affects Caucasian people of British origin. In Australia, it is the most common metabolic bone disorder after osteoporosis.

What causes Paget's disease?

The exact causes of Paget's disease are not completely understood.

There are some known risk factors that increase your chance of having Paget's disease:

• Genetics: You are more likely to develop Paget's disease if a close family member has had it.
• Ethnicity: It is more common in people from England, Scotland, Central Europe, Greece and in countries settled by European migrants such as Australia and New Zealand.
• Past illness: If you previously were infected with a viral infection of measles, respiratory syncytial virus (RSV) or paramyxovirus you are at a higher risk.
• Environmental exposures: Exposure to wood fire heating during childhood can increase your risk.
• Older age: As you get older, you have a greater chance of developing Paget's disease.

What are the symptoms of Paget's disease?

Many people with Paget's disease do not have any symptoms. The most common symptom people do develop is a dull pain at night or when resting.
Other symptoms may include:

• affected bones feeling warm to touch
• deformed or misshapen bones
• pain and aching in your bones
• problems with hearing, headache, vertigo (feeling of spinning or swaying) or tinnitus (ringing in the ears)

Paget's disease can cause other symptoms related to complications which develop because of the abnormal bones.

How is Paget's disease diagnosed?

Paget's disease is often diagnosed when your doctor is doing tests for another reason. For example, they may diagnose it after a blood test or on an x-ray done for a different health condition.

Blood test

This is the main test used to confirm Paget's disease if it is suspected. Levels of an enzyme called alkaline phosphatase (ALP) are checked. High levels of ALP without any other cause could mean you have Paget's disease.

X-ray

An x-ray can show easily recognisable changes in your bones caused by Paget's disease.

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When should I see my doctor?

You should see your doctor if you experience bone pain or notice any bone deformities.

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How is Paget's disease treated?

There is no cure for Paget's disease. The aim of treatment is to relieve symptoms and to prevent complications.

If you do not have any symptoms, you may not need treatment. Your doctor will continue to check your health regularly.

If you have symptoms, your doctor may treat your Paget's disease with:

• Bisphosphonates: This is the main treatment of Paget's disease. This medicine slows down the breakdown of your bones. It helps make them stronger and reduces the chance of complications such as bone fractures.
• Pain relief: Nonsteroidal anti-inflammatory (NSAIDs) medicines may help manage pain caused by Paget's disease.
• Surgery: Very rarely, surgery is needed to treat any fractures or cosmetic and dental deformities.
• Vitamin D supplements, if your levels are low. Exposure to sunlight can also increase your vitamin D levels, but this has other risks. Ask your doctor for advice on the best level of sun exposure in your situation.
• Diet: It is important to maintain a healthy diet. Make sure you get enough calcium in your diet to help keep your bones healthy. Ask your doctor if you need a calcium supplement — they may also recommend you see a dietitian for specific nutrition advice.
• Physiotherapy and occupational therapy: Keeping active is very important for your bone health, mobility and strength. However, if your bones are affected by Paget's disease, they may be weaker and you may not be able to do all types of exercises. It is important you talk to a physiotherapist, exercises physiologist or occupational therapist to learn which exercises are best for you.

Complications of Paget's disease

If untreated, Paget's disease can cause a range of complications in different body systems:

• Neurological (nerve): hearing loss, headache, paralysis , tingling other neurological problems
• Joint: osteoarthritis
• Bone: fractures, deformities, pain, bowed legs, enlarged bones, change in shape of skull, becoming shorter in height, or very rarely bone cancer (osteosarcoma)
• Cardiovascular: heart failure (rarely)

Resources and Support

• To learn how to keep active with Paget's disease, visit Musculoskeletal Australia.
• Read more on foods rich in calcium to help keep your bones healthy.
• To join a peer support group in your area, visit Musculoskeletal Australia.