Your Questions Answered
Support and guidance from the Paget’s Association Helpline
Being diagnosed with Paget’s disease can raise many questions. From understanding what the condition means for you, to knowing how to manage symptoms and explore treatment options, the journey can feel overwhelming at times. That’s why the Paget’s Association is here - to support you with clear, compassionate information every step of the way.
Our Helpline is available to anyone affected by Paget’s disease, whether you are newly diagnosed, living with the condition, or caring for someone who is. We offer a listening ear and trusted advice, helping you make informed decisions about your health and wellbeing.
To highlight some of the most frequently asked questions, we sat down with Diana, our Specialist Paget's Nurse who manages our Helpline. Every day, Diana speaks with people who are looking for answers and reassurance, and she shared some of the most common topics that come up in conversations.
What is Paget's disease?
"Throughout life, normal bone is renewed and repaired through a process called bone remodelling. Paget’s disease is characterised by abnormalities in this process. The affected bone is renewed and repaired at an increased rate, causing abnormalities in the bone’s structure. Pagetic bone can appear enlarged and misshapen. The most common symptom of Paget’s disease is bone pain, such as shin pain, headache or pain in the pelvis but it will depend on which bones are affected".
What causes Paget's disease?
"People often wonder, ‘How do you get Paget's disease?’. The exact cause of Paget’s disease remains unclear, but it’s believed to result from a combination of genetic and environmental factors. Genetic predisposition does play a key role, especially variations in the SQSTM1 gene. Mutations in this gene are found in 40–50% of people with a family history and 5–10% without. The children of people with Paget’s disease are about seven times more likely to develop Paget’s disease than people who don’t have a family history. Environmental factors are also suspected, as the disease has declined in many high-prevalence areas like the UK".
Who treats Paget's disease?
"Paget's disease is typically treated by specialists working in a Metabolic Bone Clinic e.g. these could be rheumatologists, endocrinologists, pathologists or other consultants with expertise in bone metabolism disorders. If your hospital does not have a Metabolic Bone Clinic, nor a specialist with a particular interest in Paget’s disease, then in the UK, a referral to a rheumatologist is usually appropriate and, in the USA, an endocrinologist."
Is Paget's disease curable?
"Many people ask, ‘Can Paget’s disease be cured?’. The answer is that whilst it is not curable, effective treatment can make the bone cells behave more normally. Many people with Paget’s, especially if it’s discovered early, can live normal, active lives."
How to treat Paget's disease?
"So, what is the treatment for Paget's disease? The main treatment is with a group of drugs known as bisphosphonates. These are medications that help regulate the overactive bone remodelling process seen in Paget’s disease. Commonly used bisphosphonates include zoledronic acid, given as a single intravenous dose, as well as oral options such as Risedronate. Zoledronic acid is often preferred due to its long-lasting effects. Paget’s disease is treated to reduce symptoms, slow excessive bone turnover and, when possible, prevent complications. Treatment is often very effective in eliminating or reducing bone pain."
How common is Paget's disease?
"Over recent decades, Paget’s disease has declined in incidence and severity. It mainly affects people over the age of 50, is more common in men than women and occurs more frequently in certain parts of the world, particularly in the UK, where approximately 1% of people over the age of 55 are thought to be affected. The reason for the decline in new cases isn’t fully understood, but it may be related to environmental or lifestyle changes."
Is Paget's disease fatal?
"Paget’s disease is not normally fatal and most people with the condition have a normal life expectancy. However, in very rare cases, a complication called osteosarcoma, a type of bone cancer, can occur – this happens in less than 1% of people with Paget’s disease. If you have questions about this or any other aspect of Paget’s disease, please contact our Paget’s Nurse Helpline".
Is Paget's disease painful?
"Paget’s disease can be painful, but not everyone experiences symptoms. When pain does occur, it is typically dull, aching and persistent, and may worsen at night. Bone pain is the most common reason for people with Paget’s disease to see their GP. Pain can occur in any bone depending on the bone/s affected. Common sites for pain: shin pain (if the lower leg is affected); headache (if the skull is affected); back pain (if the vertebrae are affected); pain in the pelvis (if the pelvic bone is affected). Fortunately, appropriate treatment can relieve or significantly reduce the pain for most people when it is directly due to Paget’s (overactivity of the bone). Pain, however, can be due to several other factors, including damage to adjacent joints due to the strain that bone expansion puts on them (osteoarthritis), or pressure that expanded bone can put on nearby nerves".
What bones are affected by Paget's disease?
"Paget’s disease can affect any bone, but bones commonly affected are the pelvis, spine, skull, femur and tibia. It can affect one bone (monostotic) or multiple bones (polyostotic). It is unclear why only certain bones are affected."
Does Paget's disease spread?
"Although Paget’s disease can affect multiple bones, it does not spread from one bone to another like an infection or cancer."
Is Paget's disease serious?
"Whilst Paget's disease can be a serious condition, its severity depends on the extent of bone involvement and any complications that arise. It is a chronic disorder and can cause bones to become enlarged, weakened and/or deformed. Many people with Paget's disease don’t experience significant symptoms, and the condition is often found incidentally during imaging or blood tests for other issues. When it is detected early and managed with appropriate treatment, it can often be well controlled. If you suspect you have Paget's disease, it's best to consult with a healthcare provider for proper diagnosis, assessment and management."
Why is it called Paget's disease?
"Paget's Disease of Bone is named after Sir James Paget, a British surgeon and pathologist who first described the condition in 1877. He observed abnormal bone growth and changes in the structure of bones in some of his patients. His work led to a greater understanding of the condition. Sir James Paget made significant contributions to the study of bone but also other diseases. His name, therefore, became associated with several disorders due to his pioneering research, such as Paget's Disease of the Breast. As a result, several diseases bear his name. Despite the shared name, they are entirely unrelated conditions."
How do you pronounce Paget's disease?
"The pronunciation of Paget's disease is PAH-jets. The first part is pronounced ‘Pah’ - the "a" being like the "a" in "hat" or "pat".
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