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News Letter

What Is Paget's Disease? Print E-mail

Paget's disease is a chronic bone disease that involves bone destruction and then regrowth of that bone which usually results in enlarged bones or bone deformities. Arthritis, pain, fractures and deformities may also develop.

The disease may become widespread or stay localized in one or two areas within the body. Often the pelvis, thigh or shinbone, spine, or upper arm may be affected. If the skull is involved, the enlarged head could cause hearing loss and blindness and the teeth may become loose.

It is more commonly found in Europe, Australia and New Zealand, but it does affect people all over the world.  Paget's disease equally affects men and women and often people are not aware they have the disease for many years. It is very rare for anyone under the age of 40 years to be diagnosed with this disease.

Causes of Paget's Disease

The cause of Paget's disease is unknown. However, experts believe that there is a hereditary factor present in Paget's disease. If your parents or siblings are diagnosed with this disease you should ask your doctor to perform an alkaline phosphatase blood test. If he or she finds that your alkaline phosphatase level is above normal, another test such as a bone scan, X-ray or bone-specific alkaline phosphatase test may be performed. There is some evidence that a virus may also cause this disease. Several years may pass before symptoms first appear.

Symptoms of Paget's Disease

If a person has a mild case with little or no symptoms, it may be several years before he or she is diagnosed. Since many people do not know they have Paget's disease, it can be confused with arthritis, osteoporosis or other bone disorders. In many cases, the diagnosis of Paget's disease is made only after more serious problems occur.

The most common symptom is bone pain. Other symptoms include:

  • Headaches and hearing loss
  • Neck pain
  • Pressure on nerves
  • Increased head size, bending of spine
  • Hip pain
  • Damage to cartilage of joints (which may lead to arthritis)
  • Barrel-shaped chest


Besides arthritis, Paget's disease may lead to other diseases.  In severe cases, heart disease may develop as a result because the heart is working harder to bring blood to the affected bones. Kidney stones are also more common in people with this disease. In rare cases, people with Paget's disease have developed a malignant tumor called osteogenic sarcoma. If there is a rapid worsening of the pain, talk to your doctor about the possibility.

Paget's disease does not cause osteoporosis even though it is possible to have both diseases. The treatment for Paget's disease is similar to that of osteoporosis.

Treatment of Paget's Disease

If treatment occurs before any major changes to the bone happen, the prognosis is usually good. Symptoms advance slowly and treatment can control or diminish the symptoms.

If your doctor has diagnosed you with Paget's disease, he or she may start you on drug therapy to manage and treat the disease. Proper nutrition and exercise will help treat the symptoms of Paget's disease. Patients should be taking 1000-1500 mg of calcium and at least 400 units of vitamin D. Exercise helps bones stay strong while weight is managed and joints stay mobile. Before starting any exercise program, patients should speak to their doctor to make sure that they will not put any unnecessary stress on affected bones.

The U.S. Food and Drug Administration (FDA) has approved the use of a number of drugs to treat Paget's disease.  For example, your doctor may prescribe a bisphosphonate such as ActonelTM , Aredia®, or Fosamax® to treat your disease. Bisphosphonates should not be taken by anyone with a severe kidney disease. As with all medications, be sure to discuss possible side effects with your doctor.  Side effects that may occur include abdominal pain, bone and joint pain, constipation, diarrhea, indigestion, muscle pain, nausea, abdominal distention, acid backup, difficulty in swallowing, esophageal ulcers, gas, headache, vomiting, changes in taste, inflammation of the stomach, rash, and skin redness.

Surgery for Paget's disease is rare. However, surgery may be necessary if you have a fracture, a severe degenerative type of arthritis, or a bone deformity. It may provide much needed relief when other options may have failed. Anti-pagetic medications may be prescribed prior to surgery to decrease bleeding and other complications. Be sure to talk to your doctor about medications and rehabilitation before you undergo any type of surgery.


Note: Actonel is co-promoted by The Alliance for Better Bone Health, an alliance between Procter & Gamble Pharmaceuticals and sanofi-avantis U.S. Fosamax is a registered trademark of Merck & Co., Inc. Aredia is a registered trademark of Novartis.


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