Medication to treat pain associated with Paget’s disease
When necessary, a group of drugs known as bisphosphonates are used to treat active Paget’s disease because they effectively reduce bone cell activity.
In a small number of people, bisphosphonates may initially cause a slight increase in bone and muscle pain, but this usually subsides after a few days.
Whilst individual responses may vary, pain, related specifically to active Paget’s disease, often responds well to bisphosphonates within a few months.
The bisphosphonates commonly used in the UK are:
Zoledronic acid 5mgs – Given intravenously (directly into the bloodstream), in a clinic setting.
Risedronate 30mgs – Taken orally for two months.
For further information regarding bisphosphonates, see our booklet ‘Paget’s Disease – The Facts’.
What other types of medication may be required?
Some people with Paget’s disease require painkillers (analgesics) as well as bisphosphonates to control pain, especially if the disease has led to damage to the bones and/or joints.
Individual responses to analgesia vary considerably, both in terms of efficacy and side effects. Always start with small doses of weak drugs that can be gradually increased or changed to stronger drugs until you have the best possible pain relief.
A variety of analgesics are used in the treatment of pain (Table 1). Each type works in a different way to relieve pain and some products contain more than one kind of analgesic.
Paracetamol is one of the safest options that may prove beneficial. It is important to take paracetamol regularly (up to 8 tablets daily) and not wait until the pain becomes intolerable. When taken correctly, it has few side effects. An overdose, however, is dangerous, therefore, if you are taking any other analgesics or cold remedies, check them for paracetamol content so you know how much you are taking.
Non-steroidal anti-inflammatory drugs (NSAIDs)
Examples of NSAIDs include ibuprofen, diclofenac, naproxen, etoricoxib, and celecoxib. They can be used to reduce pain caused by osteoarthritis as well as a number of other painful conditions. Ibuprofen can be purchased without a prescription. It is important, however, that their use be discussed with your doctor, especially if you have had a stomach ulcer, asthma, heart, liver or kidney problem. To minimise the risk of serious side effects, you should take the lowest effective dose, for the shortest time. Some NSAIDs are available as creams, gels or suppositories.
Opioids should be considered carefully for short to medium term treatment when other therapies have not worked. Examples
of weak opioids are codeine phosphate and dihydrocodeine. Tramadol is classified as a weak opioid in the UK, but in some countries is considered to be a strong opioid.
Continuous longer-term use of opioids is not advised as tolerance and dependence on the medication can compromise both safety and effectiveness.
Some tablets contain a combination of drugs, such as co-codamol, which contains both paracetamol and codeine.
Occasionally pain associated with Paget’s disease, or its complications, can be so severe, such as following a fracture, that stronger opiate drugs, such as morphine, may be recommended.
These would be used for short periods only as strong opioids are associated with dependence. Side effects can include nausea, vomiting and constipation, therefore other medication may be required to help with these effects.
As an alternative to oral medication, patches can be used, which are applied to the skin (e.g., buprenorphine).
Any medicine can have side effects or interact with other medicines that you are taking. This will vary from one patient to another, but you can ask your pharmacist or GP for individual advice. A list of possible side effects, and how common they are, can be found on the information leaflet, which normally accompanies each medication. You should give your body a chance to get used to the side effects of a medication before deciding to stop taking it. Usually, its benefits are more important than its minor side effects, which sometimes go away after a short while. Some side effects, such as constipation, can be treated effectively and should not prevent you from taking the medication, therefore, ask your pharmacist or GP for advice.
Contact your GP or pharmacist immediately if you experience a side effect that is listed as severe in the information leaflet, or you have a side effect that you think is serious. If you think that you or someone you are with may be having a serious allergic reaction to a medicine, telephone 999.
Could surgery be required to treat pain associated with Paget’s disease?
Successful surgical management of severe complications of Paget’s disease can reduce pain and improve quality of life. The most common surgical treatments for those with Paget’s include joint replacement (hip and knee), osteotomy, and fracture fixation.
When Paget’s disease causes strain on adjacent joints, it can lead to osteoarthritis. Joint replacement, of the hip or knee, may be required, and is usually very successful. The operation itself may be more technically challenging due to deformity and the altered bone quality. Joint replacement in those with Paget’s disease is highly successful and the results are comparable to those of people who don’t have Paget’s disease. Whilst there is some evidence that blood loss during the operation is higher in patients with Paget’s disease, than those who do not have Paget’s, the overall incidence of complications is low. Careful pre-operative planning, together with the consultant caring for the patient in terms of their Paget’s disease, can ensure optimal outcomes.
Fracture (broken bone)
If a bone affected with Paget’s disease breaks, it may require either a plaster cast or an operation to stabilise the fracture. Surgery
to repair a fracture may be more complex in those with Paget’s disease because of the size and structure of the bone, however, in general, the results are good.
Osteotomy means ‘cutting of the bone’. This may be carried out to shorten, lengthen or change the shape of a bone. The bone is then reset in a more normal position. This may be performed if there is marked deformity, such as a bowed leg, fissure fracture or pain that has not responded to painkillers.
Rarely, Paget’s disease in the spine can press on the spinal cord causing a narrowing that may need to be corrected surgically if medical treatment is unsuccessful.
Malignant tumours, associated with Paget’s disease, occur very rarely, when surgery may be used to remove them.
Who can help?
To find the best treatments for you, it is often necessary to try various options and see whether they help. Do not be frightened to ask for help when you need it. Many professionals including doctors, nurses, pharmacists, physiotherapists and occupational therapists, can all provide information and support. In the case of severe, persistent pain, it may be necessary to consider the specialist services provided by a pain management team in a pain clinic. When you see a healthcare professional about your pain, they will need to piece together a picture of your pain, how it is linked with other medical problems that you might have and how it affects you as a person. Keeping a pain diary can be useful to see whether it reveals patterns in intensity or anything that makes the pain better or worse. It can also ensure that you are using your painkillers most effectively. You may also have questions, therefore, make a list to put to your healthcare professionals.
Paget's Nurse Helpline
The Paget's Association provides a Paget's Nurse Helpline, during office hours, for support and advice on all aspects of Paget’s disease.