DEAR DR. GOTT: I am an 83-year-old woman. One of my many health problems is bone Paget’s disease. When I was 72, my left thigh bent so bad that it fractured. My left leg was also shorter, and I had to have a rod put in from my knee to my hip. That did not stop the disease, but it helped a lot with the pain. Then my leg got shorter again, and I was told my hipbone was bending as the left thigh did.
I went to a new doctor, who put me on Actonel for 30 days. He said he was sure that I would be rid of the Paget’s, which I really could not believe.
For the past two years, every blood test I have taken for alk phos has been below normal. I think normal is 119, and my last test was 84. My hip is still bent, but has not gotten any worse. I recommend anyone with Paget’s see an endocrinologist, and I hope they will get the same results as I did.
DEAR READER: Paget’s disease of the bone commonly affects people as they age. It is seen in the skull, spine, pelvis, legs and arms and can be relatively isolated or widespread. We commonly think that once we reach our full height, bones stop growing. This is incorrect. Bone is in a constant state of renewing itself throughout our lives. Paget’s is a distortion of that normal breakdown and rebuilding pattern. In the early stages of the disease, bone breaks down faster than it can rebuild. As the disease progresses, the body generates new bone at a faster-than-normal rate. This results in pain, tingling, weakness and misshapen bones that can fracture easily. Fortunately, Paget’s is slow in progression.
Diagnosis can be made through X-rays, bone scan or lab testing. Because many people don’t have any symptoms in the early stages, a physician might choose to order an alkaline-phosphatase test (the alk phos to which you refer) periodically on patients 40 and older.
X-rays will indicate deformities, bone enlargement and areas of bone reabsorption with bowing — all characteristic of Paget’s.
A bone scan can determine which bones are affected. This test can identify Paget’s even before it can be seen by simple X-ray.
Treatment, if indicated, might include oral or intravenous prescription medications. Oral forms appear well tolerated but carry the unwanted side effect of gastrointestinal irritation. In this instance, intravenous medications may be used but are generally not prescribed for more than six months because of resistance to one brand name over time. Switching to another drug in the same category is then recommended.
Intolerance to bisphosphonates might be handled through calcitonin. This naturally occurring hormone works to regulate bone metabolism and is commonly administered via self-injection. Side effects can include irritation at the site of the injection, nausea, facial flushing and more.
My recommendation is to eat well and supplement your diet with 1,000 to 1,500 milligrams of calcium and between 600 and 800 IU of vitamin D daily. Take all precautions to avoid falls, such as removing scatter rugs and relocating electrical cords that may run across a floor, making you susceptible to a fall. And stick with your endocrinologist who can guide you along the way.
To provide related information, I am sending you a copy of my Health Report “Osteoporosis.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a $2 check or money order to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title or print an order form off my website at www.AskDrGottMD.com.
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