What is Paget’s Disease?

Bone is a living tissue that is continually renewing itself and this is called bone turnover. Paget’s Disease of the bone is a localised disorder of bone renewal. It mainly affects the long bones (arms/legs), the pelvic bones and the skull. Only one bone or several bones may be involved in an individual. Bones affected by Paget’s Disease can become an abnormal shape and be more fragile, which increases the risk of fracture. When the Paget’s Disease is active the bone involved is often hot to touch and can be painful.

The cause of Paget’s Disease is unknown but there is frequently a family history. In some individuals the disease is only detected by chance when a person has routine investigations for another reason. As with most diseases, the severity of the condition varies between individuals.  Some may not have any symptoms and others may experience marked pain.

How is Paget’s Disease treated?

Treatment will depend on the individual patient.  If there is no pain or other symptoms then treatment may not be required.  Simple pain killers such as Paracetamol or non-Steroidal Anti-inflammatory drugs are prescribed for those who suffer from mild bone pain.  If symptoms or investigations for Paget’s show activity of bone turnover a medication may be prescribed from a group of drugs called bisphosphonates.

Bisphosphonate Treatments for Paget’s Disease

What are bisphosphonates?

Bisphosphonates work by slowing down the activity of the osteoclast cells, the cells that naturally break down bone.  This allows the cells that build bone, the osteoblasts, to work more effectively.  This results in an improvement in bone quality and a reduction in bone pain.

Your doctor may prescribe one of the following bisphosphonates along with adequate calcium and Vitamin D supplements:

Common treatments:

Zoledronic acid (Aclasta)

This is a single intravenous dose given in hospital as a day patient.

How is it given?

Zoledronic acid is given as an intravenous infusion (a “drip” into your arm). The infusion will take at least 20 minutes.  Your doctor will decide how often you will need to have this treatment. 

What are the side effects?

Approximately 1 in 3 patients experience flu like symptoms such as nausea, pain in muscles, bones or joints, tiredness or headache after the infusion.  If you experience these effects they may be mild or moderate and will start within three days after the infusion and will go away within 4-5 days after they start. To help reduce the effect of these side effects drink plenty of fluids before and after the infusion and take a simple pain killer to manage any flu like symptoms.  If symptoms occur, they are less likely to occur with subsequent Zoledronic acid infusions.

Risedronate (Actonel)

Risedronate is a tablet given as a single daily dose of 30mg for two months and may be repeated if necessary after at least two months.

How is it taken?

Risedronate tablets must be swallowed whole with a full glass of tap water on rising in the morning.  Take on an empty stomach at least thirty minutes before the first food or drink of the day.  Alternatively Risedronate can be taken at another time of day providing no food or drink is taken for two hours before and after taking Risedronate.  It is important to stand or sit upright for at least thirty minutes after Risedronate is taken.  Do not take Risedronate tablets at bedtime or before rising.  These precautions are necessary because the presence of food interferes with the absorption of the drug.  Lying down slows the rate at which the medication leaves the stomach and can cause nausea and discomfort.

What are the side effects?

The commonest side effects are those affecting the digestive system such as heartburn or diarrhoea.

LESS common treatment:

Pamidronate (Aredia)

This is an intravenous dose given in hospital as a day patient.

How is it taken?

Pamidronate is given as an intravenous infusion (a “drip” into your arm) and it is usually given in hospital as a day patient.  The infusion will take from 2 to 3 hours.  Your doctor will decide how often you will need to have this treatment but the treatment may be repeated over a period of several weeks.

What are the side effects?

You may experience flu like symptoms or nausea.  You may feel sleepy or dizzy so you are not advised to drive or operate machinery immediately after treatment.  To help reduce the effect of flu like symptoms, drink plenty of fluids before and after the infusion and take a simple pain killer to manage symptoms.

Further information on Paget’s Disease can be obtained from:

The Paget’s Association

Website: www.paget.org.uk
Tel: 0161 7994646
email:  helpline@paget.org.uk

 

Published: 28/06/2022 11:49