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Understanding Paget’s Disease

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April 2009
Understanding Paget’s Disease

Dear Dr. Harjee,

I have been diagnosed with Paget’s disease. My main problem is very severe pain. I would like to know your opinion about hypnosis. I have some good years left and would like to enjoy them.

Mrs. S.

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Dear Mrs. S.,

Paget’s disease is a rare condition of bones in which the normal breakdown and reformation of bone tissue is upset, leading to excessive abnormal growth of poor bone formation and enlarged painful bone structures. There is a virus theory, and perhaps there may be a genetic disorder in the family members. It is rarely seen in people less than 40 years of age, so after age 40, siblings and children of someone with Paget's disease may wish to have an alkaline phosphatase blood test every two or three years.

Symptoms: Many older people with discomfort in their bones and joints assume the discomfort is a natural part of aging, and don't seek treatment. But to prevent the most serious complications of Paget's disease of bone, it's important to get treatment as soon as possible after symptoms appear. Paget’s generally presents with severe bone pain that hurts worse at night, involving headaches, spine, back and thigh pains often partially relieved by OTC (over the counter) pain medicines. The doctor will generally make the diagnosis based on the history and an elevated blood alkaline phosphatase of bone origin. A bone scan may pick up affected areas on the images.

The outlook is generally good, particularly if treatment is given before major changes in the affected bones have occurred. Treatment can control Paget's disease and lessen symptoms, but it's not a cure.

Care: It is important at the outset to know that the kidney is functioning properly since Paget’s may cause kidney stones (and this pain might be confused with the back pain that often accompanies Paget’s) and since many of the treatments could compromise kidney function. So it is very important to stay well hydrated by drinking at least 64 ounces of water a day. It is also important to exercise regularly, eat nutritious meals with vegetables and fruits, and maintain ideal body weight to decrease the pressure on the long bones. Take calcium and vitamin D supplements, at least 800 units of vitamin D and 1200 of calcium, and get out in moderate sunshine for about 20 minutes per day.

Medications: Pain control will improve general wellbeing, improve sleep quality and also control the progression of the disease. Nonsteroidal anti-inflammatory drugs (NSAIDs) drugs such as OTC Advil, Tylenol and Aleve may allow for some relief early on, but with time more effective prescription NSAIDs may be needed. The standard of care involves the use of bisphosphonates such as Fosamax, Actonel, Boniva and the new IV forms of drugs such as Zometa and Reclast. These drugs, though used for osteoporosis, are also the current treatment of choice for Paget’s. Other drugs such as calcitonin have been used very successfully.

The use of scheduled drugs such as narcotics (also called controlled substances) may become necessary. These are excellent drugs that come in pill form, suspensions, injections or patches. My preference remains the patch for convenience.

Hypnosis is a less preferred mode of treatment in these days of excellent medicines that were not available 20 years ago. The new medicines have changed how doctors can now manage pain and titrate drugs with amazing precision. With measuring the alkaline phosphatase and the response of your pain, your doctor will be able to judge your condition with mutual satisfaction.

Many patients are trying yoga with much success; however, I would be careful not to overexert the long bones. Water aerobics in conjunction with proper pain management can give you a chance to enjoy very normal life with many good years ahead of you!!


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