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The information in each section below explains what Paget's disease is, how it is diagnosed and discusses causes, symptoms and complications. See the Treatment section for information on the treatment and interventions which may be used.

CLINICAL PAGET'S GUIDELINE

Recommendations for Clinicians

A clinical Guideline, for the Diagnosis and Management of Paget’s Disease of Bone in Adults, was commissioned by the Paget's Association and published in 2019, in the Journal of Bone and Mineral Research. It has been endorsed by the European Calcified Tissues Society, the International Osteoporosis Foundation, the American Society of Bone and Mineral Research, the Bone Research Society (UK), and the British Geriatric Society. 

WHAT ABOUT SIDE EFFECTS?

WHAT ABOUT SIDE EFFECTS OF BISPHOSPHONATES?

You should discuss your individual circumstances with your doctor, but if bisphosphonate treatment is required, the benefits often outweigh the risk of any potential side effects.

ALTERNATIVES TO ZOLEDRONATE

Intravenous treatment with zoledronate (zoledronic acid) is usually the first consideration, as it acts quicker and lasts longer, however, alternatives can be found below.

Alternatives to Zoledronate for Paget's Disease

Risedronate (oral)

Bisphosphonates can also be given as tablets; these are slightly less effective than an infusion of zoledronic acid, at reducing bone remodelling, and the effect doesn’t last quite as long.

ZOLEDRONATE TREATMENT

Zoledronate Infusion

For those who require treatment, the current first-line bisphosphonate, due to its potency and prolonged duration of action, is zoledronate (zoledronic acid). It is the bisphosphonate most likely to relieve pain from active Paget’s disease. It is usually given in a hospital, as an outpatient.

A single dose of 5mg is given through an infusion (a drip) directly into the bloodstream (intravenous), over 15 to 30 minutes.

ASSESSMENT

Assessment of Paget's Disease

When Paget’s disease is suspected, it is important that there is a detailed assessment process, ideally carried out by a hospital consultant who understands the condition. The consultant will consider symptoms, enquire about any family history of the condition, and ensure that appropriate investigations are carried out.

TREATMENT WITH BISPHOSPHONATES

Treatment for Paget's Disease

Paget’s disease does not always cause any symptoms and not everyone needs treatment. The main reason for treatment is if the affected bones are painful. If the pain is directly from Paget’s disease, it often improves with treatment. Pain, however, can arise from complications.

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Paget's Disease

The information in each section below explains what Paget's disease is, how it is diagnosed and discusses causes, symptoms and complications. See the Treatment section for information on the treatment and interventions which may be used.

WHAT ARE THE POSSIBLE COMPLICATIONS?

Complications of Paget's Disease

The potential for complications will depend on which bones are affected by Paget’s disease. Complications may require medical or surgical intervention.

Examples of complications arising from the involvement of specific bones:

HOW IS PAGETS DISEASE DIAGNOSED?

How is Paget's Diagnosed?

It has been estimated that less than 10% of patients with x-ray evidence of Paget’s disease come to medical attention. When Paget's disease is suspected, a full assessment by a hospital consultant is recommended to determine if treatment is required.

Paget's disease may be identified by an x-ray, blood test or bone scan.

In many cases, Paget’s disease is found by chance when tests are carried out for another reason.

  1. Blood tests

WHAT ARE THE SYMPTOMS?

The Symptoms of Paget’s 

Many people who have Paget’s disease do not have symptoms and never develop complications. In many cases, individuals are unaware that they have the condition. It may be discovered by chance on x-ray or if a blood test is performed for another reason.

Of those who present with symptoms, pain is the most common. Pain may arise from the affected bone itself, or from the altered biomechanics of limb deformity; for example, a bowed leg alters the way you walk and puts stress on the joints and soft tissues.

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