​​​Paget's disease​

Paget's disease is the abnormal destruction and growth of bones that leads to brittle bones. Normally, bone tissues are constantly being broken down and absorbed by the body and new tissues take up their space. In Paget's disease, old tissues break down and absorb much faster in turn increasing the rate of new tissues growing. The resulting bone if often weak and fractures easily. This disorder commonly occurs in the bones of the arms, collarbones, pelvis, skull, spine and legs.

The exact cause of Paget's disease is unknown but it may be caused by genetic factors or a viral infection in your bone cells that may be present for many years before any problem becomes evident. You are more susceptible to this disease if it runs in your family. Older people above the age of forty and men are more at risk of suffering from this disease.

Most people with this disorder rarely experience any symptoms. The most common symptoms, when they do occur, include:

  • Bone pain, joint pain and stiffness

  • Fractures

  • Pain, tingling and numbness in arms and legs due to compressed nerve roots of an affected spine​

Set an appointment with a doctor at the Musculoskeletal and Sports Medicine Service Line at The Aga Khan University Hospital if you notice:

  • Pain in your bones and joints

  • Bone deformities

  • Tingling and weakness​​​

Your time with your doctor maybe limited, so make sure to prepare for your visit beforehand. Here are some tips to help get you started.​​

Once you have mentioned your symptoms to your doctor, they will perform a physical exam of your body, specifically the parts which are causing you pain. They may also discuss your past medical history. For an accurate diagnosis, you may be asked to get the following test conducted:

  • Bone X-ray scans to look for any deformities and thickness of the bones. In case of Paget’s disease, there may be some bowing of your long bones and they may be too thick. This disease is usually unearthed in an X-ray scan performed for a reason other than to look for signs of Paget’s disease.  

  • Bone scan in which a radioactive material (radiotracer) is injected in your body which travels to the bones most affected by the disease. The radiotracer emits little bits of radiation which is detected by the camera as it scans your body

  • Blood test are conducted to determine the level of alkaline phosphatase in your blood which is elevated in case of Paget’s disease ​

If there is an elevated levels of alkaline phosphatase in your blood or you are at a risk of other problems from the Paget’s disease, your doctor will prescribe certain treatments which may include:

  • Bisphosphonates, taken orally or injected in the vein depending on the type of drug, are the first course of action against Paget’s disease. They make the disease inactive by decreasing the bone remodelling. They may irritate your gastrointestinal tract

  • Calcitonon, taken by a nasal spray or injection, are prescribed if you can’t tolerate bisphosphonate. Calcitonin is a hormone involved in bone metabolism and it has similar benefits as bisphosphonate. Side effects may include nausea, facial flushing and irritation at the injection site.

If the medications fail to ease your pain, you may have to undergo surgery to:

  • Assist the fractures in healing

  • Replace joints affected by severe arthritis

  • Realign deformed bones

  • Reduce nerve pressure

You may also need:

  • Physical therapy to increase muscle strength and improve balance to reduce the risk of falling and to prevent fractures

  • Splints or braces to support your bones and joints​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.

 The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the 'Important Numbers' section on the website homepage.

 The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments' costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the 'Important Numbers' section on the website homepage.​

Your doctor and or nurse will give you specific instructions about the prescribed medication. Please ensure that you take or use the prescribed medicine as advised. It can be dangerous to your health if you self-prescribe. Please inform the doctor or nurse beforehand if you have experienced any adverse reactions to any medications in the past. If you experience any symptoms of drug poisoning, overdose or severe reaction please contact the Pharmacy Service at The Aga Khan University Hospital immediately. You can find the contact number of the Pharmacy Services in the 'Important Numbers' section on the website homepage​
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​​The information provided on our website is for educational purposes and not intended to be a substitute for medical advice, diagnosis or treatment. You should always seek the advice of your doctor or other healthcare professional provider.