Paget’s disease of the bone is a chronic disorder where the body’s normal process of bone remodeling becomes disorganized. This causes an imbalance between the breakdown of old bone and the formation of new bone, resulting in bones that are structurally abnormal, enlarged, and prone to fracture. Managing this complex condition effectively requires a collaborative approach involving several different medical specialists. A team of professionals works together to manage the underlying disease activity, address complications, and maintain a patient’s quality of life.
The Initial Assessment and Coordination Team
The Primary Care Physician (PCP) or a General Internist often serves as the initial point of contact and the long-term coordinator of care. Paget’s disease is frequently discovered incidentally during routine blood tests, which may reveal an elevated level of alkaline phosphatase, or through an X-ray performed for an unrelated reason.
Upon suspicion or initial diagnosis, the PCP manages the coordination of necessary referrals to specialized care. They maintain a broad overview of the patient’s general health, managing any coexisting conditions and monitoring for new symptoms. The PCP ensures all aspects of the patient’s health are addressed while working with specialists treating the bone disorder.
Specialists Managing Core Disease Activity
The core medical management of Paget’s disease focuses on suppressing abnormal bone turnover. This task falls to specialists in metabolic bone disorders, typically Endocrinologists or Rheumatologists, who diagnose the extent of the disease and prescribe pharmacological treatments.
These specialists use diagnostic tools like plain X-rays and radionuclide bone scans to determine which bones are affected and the disease’s severity. They initiate and monitor the use of bisphosphonates, the primary medication used to treat Paget’s disease. Bisphosphonates, such as zoledronic acid, inhibit the overactive cells that break down bone (osteoclasts), helping to normalize the remodeling cycle.
The specialist determines the optimal timing for treatment cycles and monitors the patient’s response by measuring serum alkaline phosphatase levels. Treatment with a single intravenous dose of zoledronic acid can often lead to sustained remission for years. These experts also ensure the patient maintains adequate intake of calcium and vitamin D, which is required for healthy bone metabolism during therapy.
Surgical and Procedural Experts for Complications
When Paget’s disease leads to structural damage or nerve compression, surgical intervention may be necessary. Orthopedic Surgeons are the most frequently consulted experts, addressing mechanical complications such as fractures, severe arthritis, or bone deformities.
Orthopedic procedures include total joint replacements, most commonly of the hip or knee, when arthritis is severe and unresponsive to medical therapy. They also perform osteotomies to realign deformed bones and internal fixation to stabilize fractures. Pre-treatment with bisphosphonates before elective surgery is often recommended to reduce the risk of excessive bleeding.
If the disease affects the skull or spine, leading to nerve compression, other specialists may be required. Neurosurgeons or Otolaryngologists (ENT specialists) may intervene if bone enlargement causes hearing loss or spinal stenosis. While bisphosphonates can often relieve nerve compression symptoms, surgery is reserved for cases with persistent or severe neurological impairment.
Supportive Care for Mobility and Pain
A team of allied health professionals provides supportive care focused on managing symptoms and improving the patient’s functional capacity. Physical Therapists are instrumental in maintaining strength, joint mobility, and balance, which can be compromised by bone pain and structural changes. They create customized exercise programs to strengthen muscles supporting affected joints and help correct gait abnormalities.
Occupational Therapists assist patients in adapting to daily living activities that may be challenging due to bone pain or deformity. They may recommend assistive devices, such as walking canes or braces, to reduce stress on affected bones and improve safety. For chronic pain that persists despite effective medical treatment, Pain Management Specialists may be consulted to employ various therapies, including medications or interventional procedures, to improve comfort.