Assessment and Treatment
Bisphosphonates are a class of drugs effective for the treatment of Paget's disease as they calm down the over activity within the bone. Whilst treatment is not a cure, it makes the bone behave in a more normal way and can relieve pain caused by active Paget's disease. Treatment may be recommended, particularly if the affected bones are painful. Sometimes treatment is given if Paget's disease affects a site that might be expected to cause complications such as the skull or a weight bearing bone
Zoledronate is often the drug of choice. Given as a single dose of 5 mg into the bloodstream, it can be effective for several years. See below for more treatment options.
Referral for assessment: In some cases Paget’s disease is found by chance, does not cause any symptoms and requires no treatment. Referral to a hospital consultant however, is recommended so that a full assessment can take place. See below for more detail regarding referral including Paget's Association Centres of Excellence.
- Referral for assessment
Referral to a hospital consultant is recommended so that a full assessment can take place. This will include blood tests, an x-ray of any bones that are of particular concern and an isotope bone scan to assess the extent and activity of the disease.
In some cases Paget’s disease does not cause any symptoms and requires no treatment however, a good assessment is still necessary.
- Treatment may be recommended if the affected bones are painful
- Sometimes treatment is given if Paget's disease affects a site that might be expected to cause complications such as the skull or a weight bearing bone
The website of your local hospital may list your local specialists. They are often (not always) found in the rheumatology or endocrinology department. In some areas there may be a metabolic bone centre or clinic.
Centres of Excellence
The Paget's Association has awarded Centre of Excellence status to several hospital and university departments which demonstrate excellence in both the treatment of Paget’s disease and research into the condition. Details can be found by following this link.
- Treatment with Bisphosphonates
Not everyone requires treatment however, it is important to have a full assessment by a hospital consultant. Bisphosphonates are a group of drugs that reduce abnormal bone turnover, leading to a more normal bone structure. They control existing Paget's disease and help to reduce pain caused by active disease. They also have a long lasting effect so that a course of treatment may last for months or years.
Bisphosphonates are either given as tablets or directly into the bloodstream (intravenously) and often given together with calcium and vitamin D supplements, as adequate intake is necessary for the treatment to work. Bisphosphonates given intravenously last longer than oral treatment and are usually given in hospital as an outpatient. The most common treatment is with Zoledronic Acid given as an infusion into the blood stream. This has been shown to be effective for many years and therefore may not need to be repeated. Further details can be found in our booklets which are available in the members' area.
- Intravenous Preparations
Zoledronate, is often the drug of first choice, given as a single dose of 5 mg into the bloodstream. It can be effective for several years.
Alternatively, Pamidronate can be used. Several doses are given into the bloodstream and repeated when necessary, dependent on symptoms.
Treatment is usually given as a hospital outpatient. These drugs may cause “flu like” symptoms 24-48 hours after treatment. It is important to notify your GP or hospital should lasting side effects occur.
Free Booklets containing more detailed information are available to download in the Member's Area of this website. Alternatively, they can be posted to you. Please telephone 0161 799 4646 or use the contact form.
- Oral Preparations
Whilst intravenous treatment is usually the first consideration as it acts quicker and lasts longer, treatment can be given orally.
Risedronate is the most commonly used oral preparation. Given as a short course, one tablet is taken daily for 2 months.
Prior to starting treatment it is essential to read the instructions on how to take the tablets. They need to be taken whilst fasting, and it is important not to lie down for at least 30 minutes after taking them.
There are a number of possible effects to be aware of. These include heartburn, stomach discomfort, and on rare occasions, joint pains and skin irritation. Should lasting side effects occur it is important to notify your GP.
Further treatment may be given after 6 months.
Free Booklets containing more detailed information are available to download in the member area of this website. Alternatively, they can be posted to you - see our online shop for details or telephone 0161 799 4646.
- Other medication
Painkillers may be required. Not all those with Paget’s disease experience pain. Pain is however, the commonest presenting symptom of Paget’s disease.
Pain can be a warning that something is wrong and should not be ignored. It is therefore important to have pain assessed by your doctor. Pain in Paget’s disease may be directly related to the disease itself as a consequence of increased bone activity. Pain can also occur as a result of damage to the adjacent joints (osteoarthritis), a break in the bone (fracture), pressure on the nerves from enlarged bone or as the result of deformity of the bones, which can put stress on joints and soft tissues. In rare cases (less than 1%) pain can arise from a cancerous change within the bone (sarcoma).
You will find useful information about dealing with pain in our Booklet "Paget's Disease and Pain". This can be downloaded from the Member's Area of this website, or you can contact us to request a copy.
As Paget’s disease near a major joint may increase the risk of osteoarthritis, joint replacement surgery may be required.
Fractures: If a fracture cannot be stabilised with a plaster cast, surgery may then be required.
Surgery is occasionally required to correct marked deformity.
For more information see our Paget's Disease - The Facts booklet and our Newsletters available in the Member's Area of this website.