Diagnosis

During the physical exam, your doctor will examine areas of your body that are causing you pain. He or she may also order X-rays and blood tests that can help confirm the diagnosis of Paget's disease of bone.

Imaging tests

Bone changes common to Paget's disease of bone can be revealed by:

  • X-rays. The first indication of Paget's disease of bone is often abnormalities found on X-rays done for other reasons. X-ray images of your bones can show areas of bone reabsorption, enlargement of the bone and deformities that are characteristic of Paget's disease of bone, such as bowing of your long bones.
  • Bone scan. In a bone scan, radioactive material is injected into your body. This material travels to the spots on your bones most affected by Paget's disease of bone, so they light up on the scan images.

Lab tests

People who have Paget's disease of bone usually have elevated levels of alkaline phosphatase in their blood, which can be revealed by a blood test.

Treatment

If you don't have symptoms, you might not need treatment. However, if the disease is active — indicated by an elevated alkaline phosphatase level — and is affecting high-risk sites in your body, such as your skull or spine, your doctor might recommend treatment to prevent complications, even if you don't have symptoms.

Medications

Osteoporosis drugs (bisphosphonates) are the most common treatment for Paget's disease of bone. Some bisphosphonates are taken by mouth, while others are given by injection. Oral bisphosphonates are generally well-tolerated, but may irritate your gastrointestinal tract. Examples include:

  • Alendronate (Fosamax)
  • Ibandronate (Boniva)
  • Pamidronate (Aredia)
  • Risedronate (Actonel)
  • Zoledronic acid (Zometa, Reclast)

Rarely, bisphosphonate therapy has been linked to severe muscle, joint or bone pain, which might not resolve when the medication is discontinued. Bisphosphonates also can increase the risk of a rare condition in which a section of jawbone dies and deteriorates (osteonecrosis of the jawbone), usually associated with dental disease or a tooth extraction.

If you can't tolerate bisphosphonates, your doctor might prescribe calcitonin (Miacalcin), a naturally occurring hormone involved in calcium regulation and bone metabolism. Calcitonin is a drug that you administer to yourself by injection or nasal spray. Side effects may include nausea, facial flushing and irritation at the injection site.

Surgery

In rare cases, surgery might be required to:

  • Help fractures heal
  • Replace joints damaged by severe arthritis
  • Realign deformed bones
  • Reduce pressure on nerves

Paget's disease of bone often causes the body to produce too many blood vessels in the affected bones, increasing the risk of serious blood loss during an operation. If you're scheduled for surgery that involves bones affected by Paget's disease, your doctor might prescribe medications to reduce the activity of the disease, which tends to reduce blood loss during surgery.

Lifestyle and home remedies

To reduce your risk of complications associated with Paget's disease of bone, try these tips:

  • Prevent falls. Paget's disease of bone puts you at high risk of bone fractures. Ask your doctor for advice on preventing falls. He or she may recommend that you use a cane or a walker.

    Fall-proof your home. Remove slippery floor coverings, use nonskid mats in your bathtub or shower, tuck away cords, and install handrails on stairways and grab bars in your bathroom.

  • Eat well. Be sure your diet includes adequate levels of calcium and vitamin D, which helps bones absorb calcium. This is especially important if you're taking a bisphosphonate. Review your diet with your doctor and ask if you should take vitamin and calcium supplements.
  • Exercise regularly. Regular exercise is essential for maintaining joint mobility and bone strength. Talk to your doctor before beginning an exercise program to determine the right type, duration and intensity of exercise for you. Some activities may place too much stress on your affected bones.

Preparing for your appointment

Most people with Paget's disease of bone don't have any symptoms and are diagnosed when an X-ray or blood test taken for another reason reveals signs of Paget's disease of bone. In some cases, you may be referred to a doctor who specializes in metabolic and hormonal disorders (endocrinologist) or in joint and muscle disorders (rheumatologist).

Here's some information to help you get ready for your appointment.

What you can do

When you make the appointment, ask if there's anything you need to do in advance, such as fasting before having a specific test. Make a list of:

  • Your symptoms, including any that seem unrelated to the reason for your appointment
  • Key personal information, including major stresses, recent life changes and family medical history
  • All medications, vitamins or other supplements you take, including the doses
  • Questions to ask your doctor

Take a family member or friend along, if possible, to help you remember the information you're given.

For Paget's disease of bone, some basic questions to ask your doctor include:

  • What's likely causing my symptoms?
  • What are other possible causes for my symptoms?
  • What tests do I need?
  • Is my condition likely temporary or chronic?
  • What's the best course of action?
  • What are the alternatives to the primary approach you're suggesting?
  • How can I best manage this condition with my other health conditions?
  • Are there restrictions I need to follow?
  • Should I see a specialist?
  • Are there brochures or other printed material I can have? What websites do you recommend?

Don't hesitate to ask other questions.

What to expect from your doctor

Your doctor is likely to ask you some of the following questions:

  • Have you had numbness or tingling?
  • How about muscle weakness?
  • Any new headaches?
  • Has your hearing recently worsened?