Paget Disease of Bone: Symptoms, Blood Tests and Next Steps

What it involves

MedlinePlus explains that Paget disease of bone is a chronic bone disorder in which the normal cycle of bone breaking down and regrowing goes wrong. Bone breaks down and regrows too quickly, so it ends up bigger and softer than normal, and it may be misshapen and easily broken. It usually affects just one or a few bones.

Who this is for

• Older adults with deep bone pain or joint stiffness that does not follow the usual arthritis pattern.
• Patients whose blood work showed an unexplained high alkaline phosphatase or calcium level.
• People with a close relative who has Paget disease, which MedlinePlus says raises the chance of having it.
• Anyone noticing a bowing leg, a changing head shape, or new headaches with hearing loss.

What to expect

• Questions about where the pain is, how long it has lasted, family history and past fractures
• A physical exam of the painful area, including the joints, spine and legs
• Blood work, which the practice offers, since Paget disease can change tests such as alkaline phosphatase and calcium
• A referral for x-rays, a bone scan or a bone specialist when those are needed

Who is more likely to have it

MedlinePlus says researchers do not know for sure what causes Paget disease. Environmental factors may play a role, and it sometimes runs in families, with several genes linked to it. It is more common in older people and in people of northern European heritage, and a close relative with the condition makes it much more likely. The encyclopedia adds that the disease has become much less common over the last 50 years. Because most people feel nothing, a family history is a good reason to mention it at a regular visit.

What it can feel like

MedlinePlus says the symptoms are similar to those of arthritis and other disorders, so they are easy to explain away. Pain can come from the disease itself or from arthritis that develops next to a misshapen bone. When the pelvis or thighbone is involved there can be hip pain, which the hip pain guide describes, and joints worn by uneven pressure may need the approach in the osteoarthritis guide. When the skull is affected there can be headaches and hearing loss, and the hearing loss guide explains how fading hearing is checked. Paget disease usually worsens slowly and does not spread to normal bones.

Problems it can lead to

MedlinePlus lists arthritis, heart failure in severe disease, kidney stones, pressure on the brain, spinal cord or nerves, loose teeth when facial bones are involved, rare vision loss and, rarely, bone cancer as complications. Extra calcium released as bone breaks down is what can lead to kidney stones, and the encyclopedia notes that Paget disease is sometimes discovered while a provider is searching for the cause of high blood calcium, which the high calcium guide covers. Treating the condition early is how complications are avoided.

How it is found

According to MedlinePlus, a provider uses your history, a physical exam, an x-ray of the affected bones, an alkaline phosphatase blood test and sometimes a bone scan, and Paget disease is almost always diagnosed with x-rays. The encyclopedia adds that elevated markers of bone breakdown can help, and that the disease can change alkaline phosphatase and serum calcium results. Sometimes it is found by accident when one of these tests is done for another reason. A primary care visit is where the blood work starts; the x-ray and bone scan are arranged by referral.

Treatment, and why not everyone needs it

The encyclopedia says not all people with Paget disease need treatment, particularly those with only mildly abnormal tests and no symptoms. Treatment is commonly advised when weight-bearing bones are involved and the risk of a break is higher, when changes are worsening quickly, when there is deformity or pain, or when the skull is affected, to prevent hearing loss. Bisphosphonates are the first medicines used, and calcitonin is another option. Surgery is sometimes needed for complications. Diet and exercise do not treat Paget disease, but MedlinePlus says enough calcium and vitamin D, as the bone health guide explains, keeps the skeleton healthy.

When to be seen quickly

Contact your provider for new or worsening bone pain, a sudden change in hearing, a new bowing or swelling of a limb, or a bone that breaks with little force. Go to the ER or call 911 after a fall with a deformed limb or inability to bear weight, and for new weakness, numbness, trouble walking or loss of bladder or bowel control, because MedlinePlus lists pressure on nerves as a complication. Check with your provider before starting a new exercise program, since the exercise must not put too much stress on the affected bones.

Sources

• MedlinePlus Medical Encyclopedia: Paget disease of the bone
• MedlinePlus: Paget's Disease of Bone