Managing myeloma bone disease

Myeloma bone disease, which is sometimes shortened to MBD, and bone pain are the most common symptoms of myeloma, affecting about 80% of people with the condition. In fact, myeloma is often first diagnosed when bone pain is being investigated. 

Many people find that bone disease and the pain it causes is one of the most challenging parts of living with myeloma. It helps to know that there are treatments that help manage bone disease and its symptoms, including bone pain. There are also simple things you can do to encourage bone health.

We have outlined some key information about myeloma bone disease on this webpage. If you would like to read more, see our infosheet below.

What causes myeloma bone disease?

Healthy human bones are maintained by a fine balance between the:

• breakdown of old bone by cells called osteoclasts 
• building of new bone by cells called osteoblasts.

This cycle usually keeps bones in an ongoing state of renewal, which is called bone remodelling. In myeloma, this balance can be disrupted. Myeloma cells send signals to the osteoclasts, causing them to increase bone breakdown. At the same time, myeloma cells reduce the activity of osteoblasts, which slows the building of new bone.

Healthy bone remodelling compared with myeloma bone disease

What happens in myeloma bone disease?

The imbalance of bone breakdown and building in myeloma can lead to:

• osteoporosis or osteopenia — where your bones become thinner and weaker and develop weak spots, causing them to break more easily 
• lytic lesions — holes in your bones, which also cause them to break more easily 
• pathological fractures — where your bones break even from a small amount of pressure 
• compression or crush fracture — when one or more bones in your spine (vertebrae) collapse, causing a loss of height or hunched posture 
• hypercalcaemia — where bone breakdown causes calcium to be released into the blood too quickly 
• bone pain — which is the most common symptom of myeloma bone disease
• neurological complications — when nerves in your spinal cord are compressed due to a fracture or myeloma tumour, which can cause pain, weakness, tingling, loss of sensation, or problems passing urine or using your bowels.

The bones most commonly affected by myeloma bone disease are the ones in your spine, pelvis, ribs and skull — which are sometimes called the axial skeleton.

How is myeloma bone disease diagnosed and monitored?

There are many different types of scans and tests used to diagnose and monitor myeloma bone disease. Your treating team will recommend the type of scan or scans they think will be best for you, depending on the location and type of symptoms you have.

Scans and tests that your treating team may recommend include:

• Whole-body low-dose CT (WBLDCT) 
• Magnetic resonance imaging (MRI)
• Positron emission tomography-computed tomography (PET/CT)
• If any of these scans show osteoporosis, your treating team may also recommend a bone density test.
• Your treating team will also use blood tests to monitor calcium levels in your blood, which can be a sign of myeloma bone breakdown. 

To learn more about these scans and tests our page Understanding your tests

I felt reassured knowing that my treating team was keeping an eye on my bones with the scans I was having.

– Shirley, Queensland

How is myeloma bone disease treated?

Myeloma bone disease is most commonly treated with a type of medicine called a bisphosphonate. 

Bisphosphonates are small molecules that attach to calcium and are taken up into your bones where they interrupt the bone breakdown caused by myeloma cells. 

Bisphosphonates have many benefits, including: 

• preventing or slowing further bone breakdown and damage 
• reducing bone pain and the need for pain relief medicine 
• reducing the chance of pathological fractures due to myeloma bone disease 
• correcting and preventing hypercalcaemia (higher than normal levels of calcium in your blood caused by bone breakdown) 
• improving the chance of bone healing and recovery of bone strength 
• improving your quality of life by reducing pain and making mobility easier 
• possibly having an anti-myeloma effect that can help with overall myeloma control. 

How bisphosphonates work

What are the different types of bisphosphonates?

In Australia, there are two different types of bisphosphonates available to treat myeloma bone disease. 

Medicine name	Brand names	How it is given
Zoledronic acid	Zometa®	Intravenous (IV) infusion over at least 15 minutes
Pamidronate disodium	Aredia®	IV infusion over 90–120 minutes

Your treating team will talk with you about the bisphosphonate they recommend for you and how often it should be given.

After some time, you may need your treatment schedule adjusted or to stop bisphosphonates altogether. This will depend on your risk of myeloma bone disease, overall health, and any side effects you experience. 

Each month, I go to the clinic to have my bisphosphonates. I am able to have them on the same day as my myeloma treatment, which saves on trips to the hospital.

– Hanh, Northern Territory

What are the possible side effects of bisphosphonates?

Bisphosphonates are generally well-tolerated. Always let your treating team know of any side effects so they can suggest alternatives or more ideas to help. 

Side effects are usually mild and may include:

• Fever and flu-like symptoms
• Bone aches and pains
• Vein irritation or swelling
• Eye problems 
• Mild nausea

More serious side effects with bisphosphonates are not as common and include:

•  Lowered levels of electrolytes in your blood
•  Osteonecrosis of the jaw
•  Kidney damage

What is osteonecrosis of the jaw (ONJ) and how can I avoid it?

ONJ is an uncommon but serious side effect of treatment with bisphosphonates and denosumab.

In ONJ, bones in the jaw become damaged and don’t heal for a long time. Symptoms include pain, swelling and exposed bone around the tooth sockets and jaws. 

The risk of ONJ is higher if you are having intravenous bisphosphonates, after long-term treatment, and after having invasive dental work such as tooth extractions, implants or oral surgery.

You can help to reduce the risk of ONJ by:

•  having a full dental check-up and having any invasive dental work done before starting bisphosphonates 
• keeping up a good oral care routine with regular brushing and flossing 
• seeing your dentist every 6–12 months for check-ups
• avoiding any invasive dental work while on bisphosphonates. If you can’t avoid invasive dental work, then you will need to stop treatment for a period and then restart bisphosphonates when your mouth has fully healed. Any dental work should be done by an oral surgeon experienced with ONJ and you should let your haematologist know about the plan for this as soon as possible.

I saw the dentist at the hospital prior to starting bisphosphonates, and have kept up with regular dental check-ups with my local dentist.

– Val, New South Wales

Other ways to manage myeloma bone disease

• Radiotherapy is used in myeloma to treat some specific problems, such as lesions and plasmacytomas, and to relieve pain, including bone pain. Not everyone with myeloma will need radiotherapy. 
• Denosumab is a different type of medicine that may be used to manage myeloma bone disease. It belongs to a class of medicines called monoclonal antibodies. This treatment is not reimbursed by the Pharmaceutical Benefit Scheme (PBS) for myeloma. Some people may be able to access denosumab under special circumstances. Please ask your treating team if denosumab may be an option for you. 

What else can I do to help my bone health?

There are some simple steps you can take to maintain your bone health and reduce the risk of osteoporosis, which can worsen the effects of myeloma bone disease: 

•  Staying active
•  Avoid high-impact exercises and contact sports
•  Eat a healthy, balanced diet

I am keeping active, but I have decided to scale back on some of the riskier activities that I enjoy, like snowboarding, just while things settle.

-Ahmed, Western Australia

Ask your doctor about your calcium and vitamin D levels. If they are low, you may need to take supplements to help improve your bone health — but remember not to take any supplements without medical advice.

Hypercalcaemia: When you have too much calcium in your blood If you’ve been told you have hypercalcaemia (too much calcium in your blood), it’s important to know that you do not usually need to restrict your calcium or vitamin D intake. 

You may read information from other sources about restricting calcium and vitamin D when you have hypercalcaemia, but this is directed towards people whose hypercalcaemia has a different cause. Hypercalcaemia in myeloma is generally managed with bisphosphonates to reduce bone breakdown, and by drinking plenty of fluids to dilute the calcium in your blood. Please ask your treating team for more information.