Paget disease of bone

Overview

Paget disease of bone is a chronic condition that affects the normal process of bone renewal. In healthy bones, old bone is broken down and replaced with new bone. In Paget disease, this process happens too quickly and in a disorganized way. The result is bone that is larger, weaker, and more likely to break. It often affects the skull, pelvis, spine, and long bones of the legs.

Paget disease of bone is not very common. It affects about 1 to 3 out of every 100 people, mostly over the age of 55. It is more common in people of European descent and slightly more common in men than women.

Paget disease mainly affects older adults, especially those over 55. It can also occur in younger people but this is very rare. People with a family history of the condition may have a higher chance of developing it.

Symptoms

Common symptoms

• Bone pain, which may be a dull ache that is worse at night or when resting.
• Bones that are larger or bent, such as a curved shin bone or a widened skull.
• Joint pain and stiffness, often in the hips, knees, or spine.
• A feeling of warmth over the affected bone due to increased blood flow.
• Fractures (broken bones) that happen more easily than normal.

Symptoms in children

• Paget disease of bone is extremely rare in children. When it does occur, symptoms may include bone pain, deformities, and an increased risk of fractures.

Symptoms in older adults

• Older adults are more likely to have multiple bones affected. They may experience bone pain, joint stiffness, and a higher risk of fractures. Some people develop hearing loss if the skull is involved, or bowing of the legs.

Causes

Main causes

• The exact cause of Paget disease is not fully understood. It is thought to involve a combination of genetic factors and a possible viral infection earlier in life that triggers the abnormal bone remodeling process.

Risk factors

• Age: Most cases occur in people over 55.
• Family history: Having a close relative with Paget disease increases your risk.
• Ethnicity: More common in people of European descent.
• Sex: Slightly more common in men than women.

When to see a doctor

See a doctor urgently if:

• If you have sudden, severe bone pain or cannot move a limb after an injury.

Book a routine appointment if:

• If you have persistent bone pain, joint stiffness, or notice that your bones look different or are getting larger.
• If you have a family history of Paget disease and are over 55, discuss screening with your doctor.

Diagnosis

Paget disease is often found by chance when an X-ray is done for another reason. If your doctor suspects Paget disease, they will ask about your symptoms, examine you, and order tests.

Tests that may be done

• X-rays: These can show the characteristic changes in bone size and shape.
• Blood test: A simple blood test (alkaline phosphatase level) can show if bone turnover is high.
• Bone scan: This test uses a small amount of radioactive dye to show areas of increased bone activity throughout the skeleton.
• Sometimes a biopsy (taking a small sample of bone) may be needed to rule out other conditions.

What to expect at your appointment

Diagnosis usually involves a visit with your general practitioner, who may refer you to a specialist such as a rheumatologist or orthopaedic surgeon. The tests are straightforward and not painful. You will get clear results and a treatment plan if needed.

Treatment

Treatment for Paget disease aims to control bone pain, slow down the abnormal bone remodeling, and prevent complications. Not everyone needs treatment – it depends on your symptoms, which bones are affected, and your age.

Self-care at home

• Maintain a healthy diet rich in calcium and vitamin D (dairy products, leafy greens, fortified foods). Ask your doctor if you need supplements.
• Stay active with gentle, weight-bearing exercise like walking or swimming to keep bones and joints strong.
• Take simple pain relief such as paracetamol or anti-inflammatory medications if suitable for you – always check with a pharmacist or doctor first.
• Prevent falls by keeping your home well-lit, removing tripping hazards, and wearing supportive shoes.

Medical treatments

Your doctor may prescribe medications that help slow down the rapid bone turnover. These are usually given as an injection or by mouth. They help reduce pain and lower the risk of fractures and deformities. Pain relief may also be recommended. Your doctor will discuss the best options for your situation.

When is surgery considered?

Surgery may be considered if there is a severe deformity, a fracture that needs fixing, or if bone damage is causing pressure on nerves (for example, in the spine). Joint replacement surgery (like hip or knee replacement) may be needed if arthritis develops.

Living with this condition

Most people with Paget disease can lead a normal, active life. It helps to listen to your body – rest when you have pain, but keep moving gently. Regular check-ups with your doctor will help monitor the condition.

Lifestyle tips

• Stay physically active with low-impact exercises like swimming, cycling, or walking.
• Eat a balanced diet with enough calcium and vitamin D.
• Avoid smoking and limit alcohol, as these can weaken bones.
• Use a cane or walker if needed to improve balance and prevent falls.

Diet and exercise

A diet rich in calcium and vitamin D supports bone health. Good sources: dairy, almonds, tofu, sardines, and fortified cereals. Gentle exercise like walking, tai chi, or water aerobics helps maintain bone strength and joint flexibility. Avoid heavy lifting or high-impact sports if you have weakened bones.

Mental health and emotional wellbeing

Living with a chronic bone condition can sometimes be stressful or worrying. You may feel frustrated by pain or fearful of falls. It is important to talk about these feelings with your doctor, a counsellor, or a support group. You are not alone.

Prevention

There is no known way to prevent Paget disease of bone because the cause is not fully understood. However, if you have a family history, you can stay alert to symptoms and get an early diagnosis. Treating the condition early can help prevent complications.

Complications

If left untreated

• Osteoarthritis: Joint damage due to misshapen bones can lead to chronic pain and stiffness.
• Bone deformities: Bones may become bowed or enlarged, for example in the legs or skull.
• Fractures: Weakened bones break more easily, sometimes from minor bumps.
• Hearing loss: If the skull is affected, the bones of the inner ear can be damaged.
• Rarely, heart problems: The increased blood flow in affected bones can strain the heart (high-output heart failure).

Long-term outlook

With proper treatment and monitoring, most people with Paget disease of bone manage their symptoms well and maintain a good quality of life. Treatment can slow down or stop the progression of the disease, and complications can often be prevented or treated. It is a manageable condition, and many people live active lives well into older age.

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