Diagnosis of Paget’s Disease

Many people with Paget’s disease are diagnosed after having tests for other conditions or to help diagnose the cause for their pain. Some common tests used to diagnose Paget’s disease include:

  • X-ray. This is the most common test that doctors use to diagnose the disease. An x-ray can evaluate the bone structure for Paget’s disease.
  • Blood test. Your doctor may order a blood test to check for the enzyme alkaline phosphatase. This test can indicate either Paget’s disease or another condition such as liver disease. If your blood contains high levels of the enzyme, it may be a sign of the disease.
  • Bone scan. A bone scan is a test that helps doctors identify which bones are affected by Paget’s disease. The test may help your doctor understand the extent of the disease. During a bone scan, a safe amount of radioactive substance is injected into a vein in your arm. The substance circulates through the bloodstream and “highlights” places in your skeleton where Paget’s disease may be present by collecting in areas where there is increased blood flow and activity of bone-forming cells characteristic of Paget’s disease.

Treatment of Paget’s Disease

If you do not have symptoms, you may not need treatment. However, if your disease is active, you have symptoms, or you have a higher chance of developing complications, your doctor may recommend treatment. The goal of your treatment is to:

  • Slow down or stop bone breakdown and formation.
  • Lower the risk of complications.
  • Ease bone and joint pain.
  • Repair fractures.
  • Correct bone deformity

Doctors can recommend several options to help treat Paget’s disease, prevent complications of the disease and promote bone health, including:

  • Medications.
  • Surgery.
  • Exercise.
  • Diet.

Treatment can help you manage your symptoms but does not cure the disease.

Medications

The primary medications your doctor may prescribe to treat Paget’s disease include:

  • Bisphosphonates, which treat a variety of bone diseases. This type of medication works by controlling the excessive breakdown and formation of bone that happens in Paget’s disease.
  • Calcitonin, which is a hormone made by the thyroid gland. In addition, calcitonin regulates blood levels of calcium and phosphate and promotes the formation of new bone.

Surgery

Although medications can regulate bone growth and minimize complications, surgery may be necessary to correct problems from the complications of the disease, such as:

  • Fractures. Surgery may allow fractures or broken bones to heal in a better position.
  • Arthritis. A hip or knee replacement may be necessary if changes in the bones cause severe disability.
  • Misshapen bones. Cutting and realigning bone affected by Paget’s disease can reduce pain in a weight-bearing joint.

Diet

If you have Paget’s disease, you do not need a special diet. However, it is important that you keep your bones strong. Calcium and vitamin D are important nutrients to help maintain healthy bone. The chart below shows how much calcium and vitamin D you need each day. If you have had kidney stones, talk with your doctor about how much calcium and vitamin D to take.

Recommended Calcium and Vitamin D Intakes

Definitions: mg = milligrams; IU = International Units
Source: National Institutes of Health, Office of Dietary Supplements, November 2018

Life-stage group Calcium mg/day Vitamin D (IU/day)
Infants 0 to 6 months 200 400
Infants 6 to 12 months 260 400
1 to 3 years old 700 600
4 to 8 years old 1,000 600
9 to 13 years old 1,300 600
>14 to 18 years old 1,300 600
19 to 30 years old 1,000 600
31 to 50 years old 1,000 600
51- to 70-year-old males 1,000 600
51- to 70-year-old females 1,200 600
>70 years old 1,200 800
14 to 18 years old, pregnant/lactating 1,300 600
19 to 50 years old, pregnant/lactating 1,000 600

Exercise

Exercise is important because it helps:

  • Build strong bones and maintain your skeletal health.
  • Prevent weight gain.
  • Keep joints mobile.

The best exercises for healthy bones are strength-building and weight-bearing exercises, such as:

  • Walking.
  • Climbing stairs.
  • Lifting weights.

Before starting a new exercise plan, talk with your doctor to avoid stress on bones affected by Paget’s disease.

Who Treats Paget’s Disease?

Paget’s disease can affect many parts of the body. You may need to see more than one type of doctor, including:

  • Endocrinologists, who treat hormonal and metabolic disorders.
  • Rheumatologists, who treat joint and muscle disorders.
  • Neurologists, who treat disorders and diseases of the spine, brain, and nerves.
  • Orthopaedic surgeons, who treat bone injuries and disease.
  • Otolaryngologists, who treat ear, nose, and throat disorders.

Living With Paget’s Disease

Fortunately, current treatments can help most people with Paget’s disease lead productive lives.  When you follow your doctor’s treatment plan, you may lower the chance of developing complications or major changes in your bones. You should also:

  • Maintain a healthy weight, which is particularly important if Paget’s disease has led to arthritis of the weight-bearing joints, such as the hip or knee. Excess weight can mean more stress – and pain – for affected joints.
  • Prevent falls by:
    • Checking your home for dangers such as loose rugs and poor lighting.
    • Installing grab bars and handrails.
    • Using nonskid mats in the bathroom and tub.
    • Having regular eye exams.
    • Increasing your balance and strength by exercising every day.
  • Live a healthy lifestyle to maintain good bone health. Do not smoke, and if you do smoke, quit. If you choose to drink alcohol, do so in moderation. It is best to have no more than one drink a day for women and no more than two drinks a day for men.