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 living tissue. They are constantly being broken down and replaced. Paget's disease occurs when 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 are the symptoms of Paget's disease?

Many people with Paget's disease do not have any symptoms. The most common symptom people report 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 (a feeling of spinning or swaying) or tinnitus (ringing in the ears)

Paget's disease can cause other symptoms from complications of abnormal bone growth.

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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 were previously infected with 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.

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 diagnosed?

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

A blood test is one of the main tests used to confirm Paget's disease. Your doctor will check levels of an enzyme called alkaline phosphatase (ALP) in your blood. High levels of ALP without any other cause could mean you have Paget's disease.

An x-ray is also important for diagnosing Paget's disease and can show typical changes in your bones. Sometimes your doctor will recommend other scans.

How is Paget's disease treated?

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

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

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

• bisphosphonate medicines — this is the main treatment for Paget's disease. It slows down the breakdown of your bones. It helps make them stronger and reduces the chance of complications such as bone fractures.
• pain relief — non-steroidal anti-inflammatory (NSAIDs) medicines may help manage pain caused by Paget's disease.
• surgery — rarely needed, but surgery may be used to treat any fractures or correct cosmetic and dental deformities.
• vitamin D supplements — if your levels are low, your doctor may also recommend safe sun exposure to help increase your vitamin D levels. Follow their guidance to avoid risks.

Living with Paget's disease

Living with Paget's disease means managing a long-term medical condition. With the right approach, you can continue to lead a full and active life.

It is important to maintain a healthy diet. Ensure 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 seeing a dietitian for specific nutrition advice.

Staying active supports your bone health, mobility and strength. If your bones are affected by Paget's disease, they may be weaker, so you may not be able to do all types of exercises. Talk to a physiotherapist, exercise physiologist or occupational therapist to learn which exercises are best for you.

Rest is as important as activity, especially when dealing with fatigue or flare-ups. Pace yourself, balance rest with movement, and spread tasks across the day to manage fatigue and reduce strain on affected bones.

Living with a chronic condition can be challenging physically and emotionally. Staying connected with your healthcare team and seeking support when needed can make a big difference.

What are the complications of Paget's disease?

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

• nerves — hearing loss, headache, paralysis, tingling and other nerve problems
• joints — osteoarthritis
• bones — fractures, deformities, pain, bowed legs, enlarged bones, change in skull shape, loss of height, or very rarely bone cancer (osteosarcoma)
• heart — heart failure (rare)

Can Paget's disease be prevented?

There is currently no known way to prevent Paget's disease. The exact cause is not fully understood, but it likely involves a combination of genetic and environmental factors.

While you can't prevent the disease, early diagnosis and treatment can help reduce the risk of complications. If you have a family history of Paget's disease or notice symptoms like bone pain, changes in bone shape, or trouble moving a joint, it's important to speak to your doctor. Regular check-ups and following medical advice can help you manage the condition effectively.

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.