Paget's disease

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Diagnosis

Paget's disease of bone can be diagnosed with a blood test and an X-ray or scan.


Blood test

A simple blood test can be carried out to check the level of a substance called alkaline phosphatase (ALP) in your blood.


People with Paget's disease of bone often have raised levels of ALP, although some people with the condition have a normal ALP level and a high level can also be caused by some other conditions.


An X-ray or scan is therefore also needed to confirm the diagnosis.


X-ray and bone scan

An X-ray can show whether your bones have become enlarged as a result of Paget's disease of bone.


Sometimes a bone scan called scintigraphy may also be carried out to check how much of your body is affected by the condition.


For this scan, a small amount of a radioactive substance is injected into your blood. This collects in areas where there's a lot of bone renewal taking place.


A gamma camera is then used to detect the radiation and highlight affected parts of the body.


Further tests

Further tests are usually only needed if you have signs of more severe Paget's disease of bone or your doctor thinks there's a chance you could have bone cancer (although this is very rare).


In these cases, you may be advised to have a:


bone biopsy – a sample of bone is removed under anaesthetic so it can be looked at in detail

CT scan – a series of X-rays of the affected bone are taken to create a detailed 3-dimensional image

MRI scan – a strong magnetic field and radio waves are used to create an image of the affected bone

Treatment

There's currently no cure for Paget's disease of bone, but treatment can help relieve the symptoms.


If you do not have any symptoms, your doctor may suggest keeping an eye on your condition and delaying treatment until any problems occur.


Bisphosphonates

Bisphosphonates are medicines that help regulate bone growth. They work by affecting the cells that absorb old bone (osteoclasts).


There are several bisphosphonates available, including:


risedronate – a tablet taken once a day for 2 months

zoledronate – a one-off injection

pamidronate – either 6 weekly injections or 3 injections every 2 weeks

These can help regulate bone growth and reduce pain for several years at a time. Treatment can be repeated when the effect starts to wear off.


The most common side effect of risedronate is an upset stomach. The main side effects of zoledronate and pamidronate are flu-like symptoms that last a day or 2.


If you're unable to have bisphosphonates, you may need daily injections of another medicine that prevents bone loss called calcitonin.


Painkillers

Over-the-counter painkillers such as paracetamol and ibuprofen can help relieve pain caused by Paget's disease of bone.


Make sure you read the packet or leaflet before taking painkillers, to check whether they're suitable for you and to find out how much to take.


If these do not help reduce your pain, your GP can prescribe more powerful painkillers.


Supportive therapies

Some people with Paget's disease benefit from supportive therapies such as physiotherapy or occupational therapy.


These therapies involve exercises and techniques that can help reduce pain, improve movement and make everyday tasks easier.


Devices that reduce the weight placed on the affected bones may also help, such as:


a walking stick or frame

orthotics – insoles made of plastic that fit inside your shoe to help support your feet

braces that support the spine in the correct position

Some therapists also use treatments such as transcutaneous electrical nerve stimulation (TENS) – a method of pain relief involving the use of a mild electrical current. The scientific evidence for TENS is not strong, but some people find it helpful.


Surgery

Surgery is usually only needed if further problems develop, such as fractures, deformities or severe osteoarthritis.


Operations that may be done include procedures to:


realign the bones after a fracture so that they heal correctly

remove and replace a damaged joint with an artificial one, such as a hip replacement or knee replacement

cut and straighten deformed bones

move bone away from a squashed (compressed) nerve

These operations are usually done under general anaesthetic, so you'll be asleep and will no t experience any pain while they're carried out.


Diet and nutrition

Calcium and vitamin D help keep your bones healthy. If you have Paget's disease of bone, it's important to ensure you get enough of these.


You get calcium from your diet. It's found in foods such as:


dairy foods – such as milk and cheese

green leafy vegetables – such as broccoli and cabbage

soya beans, soya drinks with added calcium and tofu