How common is Paget’s disease?
Paget’s disease affects approximately 1-3% of people in North America over the age of 55, with a slightly higher incidence amongst men than women. The condition is very rare in individuals under the age of 40, and incidence increases with age. Paget’s disease is more common amongst people of European descent than other ethnicities.
What are the risk factors for Paget’s disease?
The cause and risk factors of Paget’s disease are not clear. However, researchers agree that genetics is likely a factor, especially if a family member has Paget’s disease. Environmental factors can play a role as well.
What are the warning/early signs of Paget’s disease?
Paget’s disease does not often present with symptoms. Someone may have Paget’s disease with no symptoms initially, though they can occur later on. These symptoms include bone pain with accompanying joint dysfunction and bone deformities.
Early signs can include gradual bowing of the leg bone or abnormal curving of the spine, and/or damage to the cartilage where there is excessive bone growth.
In cases where the disease manifests in the skull, enlargement of the skull and loss of hearing can occur.
How is Paget’s disease diagnosed?
Paget’s disease is often diagnosed through X-rays, bone scans, and/or blood tests. X-rays and bone scans can reveal enlargement, thickening and hardening of the bone in the affected area. To determine if there are bone fractures due to Paget’s disease, a compound can be injected into the body that concentrates in areas of the bone with high mineral content, which usually indicates if a fracture or break has occurred. This can help to highlight where a bone is most impacted by Paget’s disease.
Once diagnosed, blood and urine tests can then be used to measure the extent of the disease. Abnormal concentrations of bone formation and resorption markers in the blood and urine are useful indicators for determining the extent of Paget’s disease in the bone.
What body parts are affected by Paget’s disease?
Paget’s disease most often manifests in the body’s long bones (such as leg bones) as well as the skull, spine and pelvis. Many of these bones are connected with joints that can become damaged due to weakness of the bone.
What are the symptoms of Paget’s disease?
The enlargement of individual bones, known as bone hypertrophy, is the underlying cause for the pain and joint dysfunction experienced by many people with Paget’s disease. This increase in bone density is also responsible for the osteoarthritis that sometimes accompanies Paget’s disease.
Fractures or small breaks along the affected bones are another common occurrence. When these fractures happen, Paget’s disease prevents the bone from rebuilding properly, which results in a weaker and more fragile bone. As a result, individuals are more likely to experience fractures after only minor injuries or trauma because normal bone regeneration has been compromised.
Complications from bone enlargement along the spinal cord can lead to pressure on the nerves, resulting in pain from pinched nerves and/or numbness/loss of sensation in the legs.
While there is no cure for Paget’s disease, the available treatments reduce some of the impact on the bones and alleviate associated symptoms. Treatment extends beyond medication for the symptoms, as you also want to protect and support your joints to avoid fractures.
Currently, first line treatment is a single intravenous (IV) infusion of zoledronic acid, which results in remission in a large majority of cases. This treatment decreases the breakdown of bone by slowing down the cells that can damage bone tissue. Some side effects associated with the treatment include fever, high blood pressure and diarrhea.
Bisphosphonates are a less effective treatment than the IV regimen. They are often given in the form of oral tablets and in conjunction with vitamin D and calcium supplements. These medications help to regulate the bone forming process, but a longer course of treatment (up to six months) may be required. Side effects can include heartburn and increased bone pain for a short period of time.
You can also use over-the-counter medications to address the pain from Paget’s disease. These include acetaminophen and non-steroidal anti-inflammatory drugs (NSAIDs).
The following healthcare professionals have advanced training and are registered to practice by their respective provincial/territorial colleges:
- A physiotherapist (PT) can develop an individualized rehabilitation program designed to help you increase your strength, flexibility, range of motion and general mobility and exercise tolerance through a wide variety of therapeutic treatments and strategies. These can help you reduce falls and prevent bone fractures.
- An occupational therapist (OT) can look at your activities of daily living and develop a program to help lessen your symptoms and improve your function. An OT can do a home or workplace assessment to identify ways to protect your joints and can recommend tools and aids to help you conserve energy and improve your independence. For example, this could include use of a cane and raised seats to decrease stress on your hip and knee joints.
Both PTs and OTs can recommend assistive devices, such as knee braces and hand splints, that can support your joints and protect weaker bones from breaking.
In some cases, patients with Paget’s disease undergo an osteotomy. This is a surgical procedure by which an affected bone is reshaped to correct for bowing or misalignment. Alternatively, some people with Paget’s disease may need surgery to replace a badly damaged hip or knee joint. Both surgical options can reduce pain and improve function.
A common misconception is that a painful joint requires rest. On the contrary, lack of movement can cause muscle weakness and worsen joint pain and stiffness. Light or moderate physical activity protects joints by strengthening the muscles around them, increasing blood flow to the joint and helping promote normal joint regeneration. Physical activity can also improve mood and lessen pain.
Physical activity refers to any movement that increases heart rate through the activation of your muscles, while exercise is considered a structured, planned, repetitive and purposeful activity with the goal of improving or maintaining a component of physical fitness (source: Canadian Society for Exercise Physiology). An increase in physical activity, even in small increments, can help relieve arthritis symptoms and improve your daily function.
Physical activity strengthens the muscles and connective tissues around your joints, helping support joints that have been damaged by arthritis. Physical activity includes all those activities that you do as a part of everyday life – such as vacuuming the floor, walking to work, even gardening. These kinds of activities can be very beneficial for your joints and can help you maintain and improve your mobility.
Weight bearing exercise can also help you keep your bones strong. Lifting weights and walking on a treadmill are the kinds of planned motions that we do specifically to improve our flexibility, strength or endurance. Make sure not to put additional stress on your affected bones.
You should always use your joints in ways that avoid excess stress. Techniques to protect your joints include:
- Pacing by alternating heavy or repeated tasks with lighter tasks. Taking a break reduces the stress on painful joints and conserves energy by allowing weakened muscles to rest.
- Positioning joints carefully promotes proper alignment and decreases stress on the joints. For example, squatting and kneeling may put extra stress on your hips or knees. When lifting or carrying heavy items, keep items at waist height and avoid carrying them up and down stairs.
- Using helpful tools and assistive devices conserves energy and makes daily tasks easier. Raise seat levels to decrease stress on hip and knee joints. Use a “reacher” to pick up items from the ground and a cane to decrease stress on hip and knee joints while standing or walking. Enlarge grips on utensils, such as spoons or peelers, to decrease stress on delicate hand joints. Other devices to consider include carts for carrying objects and jar/tap openers.
- Talk to your doctor about seeing an occupational therapist or physiotherapist, who may prescribe splints or braces to help align and support your joints.
Relaxation and coping skills
Developing relaxation and coping skills can help you maintain balance in your life, giving you a greater feeling of control over your arthritis and a more positive outlook. Relaxing the muscles around a sore joint reduces pain. There are many techniques to help you relax. Try meditation or deep breathing exercises. Listen to music or relaxation tapes. Imagine or visualize a pleasant and restful activity, such as lying on a beach.
For more information about relaxation and coping skills, visit our online module on Managing Chronic Pain.
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