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Paget's Disease of Bone

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Paget’s disease of bone is an uncommon, chronic condition where bone rebuilds at a faster than normal rate. Normally as we age, bone rebuilds in a slow and controlled process. In Paget’s disease, rapid and uncontrolled bone repair leads to bones that are too soft or enlarged. It’s more common among people of European descent and may affect more than one family member. Paget’s disease usually affects people after the age of 50. Caucasian men are most affected. Any bone can be involved but the pelvis, low back (spine), hips, thighs, head, and arms are commonly involved. Paget’s disease might be caused by a gene that is activated later in life by exposure to a virus.

What Are the Signs/Symptoms?

Symptoms of Paget’s disease include joint and bone pain, headaches, hearing loss, enlarged bones, bowed arms or legs, weak or soft bones that bend or break, tingling, and numbness. Certain blood and urine tests can raise suspicion for Paget’s disease and may be suspected and confirmed by imaging studies such as x-rays showing abnormal bone structure. Usually following diagnosis, non-invasive bone scans may be used to show the extent of bone involvement. A biopsy is used only if cancer is suspected, which occurs less which should be of concern in all cases but rarely occurs.

What Are Common Treatments?

Treatment is goals are aim at pain control with many common over the counter medications acetaminophen (Tylenol), ibuprofen (Advil, Motrin) and decrease bone turnover to prevent complications such as fracture. Bisphosphonates are prescription drugs that are currently the treatment of choice having shown to be effective at reducing elevated bone turnover in Paget’s disease. Oral bisphosphonates include alendronate (Fosamax), etidronate (Didronel), tiludronate (Skelid) and risendronate (Actonel). Injectable and intravenous drugs used to treat Paget’s disease include pamidronate (Aredia), zoledronate (Reclast), and calcitonin, a hormone. Surgery may be needed to treat arthritis caused by bone changes to ease pain and improve function. Medications for Paget’s disease do not treat prior damage already caused by the disease like hearing loss, bone deformities, or osteoarthritis.

Living with Paget's Disease of Bone

Most people with Paget’s disease can have a good quality of life. Prompt diagnosis and treatment can help them manage their disease effectively. Fast bone rebuilding can lead to complications, so regular examinations by a rheumatologist or bone specialist are important. People with Paget’s disease may benefit from physical therapy, cane, walker, bracing and cushioning devices to help improve symptoms or to prevent falls that could lead to a fracture.

Updated February 2023 by David Waldburg, MD, and reviewed by the American College of Rheumatology Committee on Communications and Marketing.

This information is provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnosis and treatment of a medical or health condition.

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