Medical Treatment Decisions for People With
Paget's Disease of Bone

Reviewed June 2010

Paget's disease is a chronic disorder that can result in enlarged and misshapen bones. The excessive breakdown and formation of bone tissue causes affected bone to weaken, resulting in pain, misshapen bones, fractures, and arthritis in the joints near the affected bones. Paget's disease typically is localized, affecting just one or a few bones, as opposed to osteoporosis, for example, which affects all the bones in the body.

Decisions about treating Paget's disease can be complicated because: 1) no two people are affected in exactly the same way by the disease, and 2) it is sometimes difficult to predict whether a person with Paget's disease who shows no signs of the disorder will develop symptoms or complications, such as a bone fracture, at a later date.

Although there is no cure for Paget's disease, medications (bisphosphonates and calcitonin) can help control the disorder and lessen pain and other symptoms. Paget's disease experts recommend that these medications be taken by people with Paget's disease who:

  • have bone pain, headache, back pain, or a nerve-related symptom (such as "shooting" pains in the leg) that is directly associated with the disease
  • have elevated levels of serum alkaline phosphatase (SAP) in their blood
  • display evidence that a bone fracture will occur
  • require pretreatment therapy for affected bones that require surgery
  • have active symptoms in the skull, long bones, or vertebrae (spine)
  • have the disease in bones located next to major joints, placing them at risk of developing osteoarthritis
  • develop a rare condition called hypercalcemia that occurs when a person with several bones affected by Paget's disease and a high SAP level is immobilized.

People with Paget's disease have every reason to be hopeful about their future. Today's medications, especially when started before complications begin, are often successful in controlling the disorder.

Resource

For more information about Paget's disease, contact:

  • NIH Osteoporosis and Related Bone Diseases ~ National Resource Center

    2 AMS Circle
    Bethesda,  MD 20892-3676
    Phone: 202-223-0344
    Toll Free: 800-624-BONE (2663)
    TTY: 202-466-4315
    Fax: 202-293-2356
    Email: NIHBoneInfo@mail.nih.gov
    Website: http://www.bones.nih.gov

  • The Paget Foundation for Paget’s Disease of Bone and Related Disorders

    120 Wall Street, Suite 1602
    New York,  NY 10005
    Phone: 212-509-5335
    Toll Free: 800-23-PAGET (237-2438)
    Fax: 212-509-8492
    Email: pagetfdn@aol.com
    Website: http://www.paget.org

NIH Osteoporosis and Related Bone Diseases ~ National Resource Center

2 AMS Circle
Bethesda,  MD 20892-3676
Phone: 202-223-0344
Toll Free: 800-624-BONE (2663)
TTY: 202-466-4315
Fax: 202-293-2356
Email: NIHBoneInfo@mail.nih.gov
Website: http://www.bones.nih.gov

The NIH Osteoporosis and Related Bone Diseases ~ National Resource Center provides patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases. The mission of NIH ORBD~NRC is to expand awareness and enhance knowledge and understanding of the prevention, early detection, and treatment of these diseases as well as strategies for coping with them.

The NIH Osteoporosis and Related Bone Diseases ~ National Resource Center is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases with contributions from:

The National Institutes of Health (NIH) is a component of the U.S. Department of Health and Human Services (DHHS).

Recognizing the National Bone and Joint Decade: 2002–2011.

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