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.

My question however, doesn’t have to do with the medication. Just before having the DEXA scan, I noticed several enlarged bones in my right foot and ankle. I was tested for Paget’s disease but the results were negative. At my last physical exam, my doctor noticed that my left shoulder blade had enlarged. I have seen several doctors and none can tell me what is causing my bones to enlarge. Do you have any ideas?

DEAR READER:
Because you do not say what type of testing you have had and what types of doctors you have seen I can only give you general suggestions. If these are repeats of what has been done or said, I apologize.

First, I would like to say that I hope along with your Boniva you were told to increase your calcium and vitamin D intake. Boniva and other osteoporosis medications were not designed to treat osteopenia but have been increasingly given to individuals with this pre-osteoporotic condition. If you are not already, I urge you to take 1000-1500 mg of calcium and 600-800 mg of vitamin D daily. This can be achieved through supplements or by increasing your fortified milk, cheese, and yogurt and dark leafy greens intake. Tofu is also often fortified with calcium and vitamin D to round out vegan (no animal products) diets.

Second, I suggest your seek another opinion from an orthopedic specialist who can order testing to determine if you do indeed have Paget’s disease. This condition is defined by abnormal bone break-down and re-growth. The process is sped up in sufferers and often causes bone enlargement. Despite the enlarged bones, they often are weak and brittle which is why Paget’s is often known as “soft bone disease”.

Testing can include X-rays to pinpoint bone enlargement, show re-absorption and other abnormalities. Another valuable test is a bone scan in which a material is injected to show bone better. In Paget’s disease, the affected areas show up darker than healthy, normal bone. A final step is a blood test done to determine the level of alkaline phosphatase. In most individuals with this condition, the levels are elevated. Because I don’t know what testing you have had, I cannot determine if you have had all or some of these.

Treatment for Paget’s disease is similar to that of osteoporosis. It includes biphosphonates such as Fosamax, Boniva and others, and calcitonin. Therapy is aimed at improving bone strength and mineral content.

Therefore, even if you have Paget’s disease, you are already receiving proper care; however, you need to have a diagnosis. If you don’t have Paget’s disease after having thorough testing, you need to know why you are having spontaneous bone enlargement. Ask your primary care physician for a referral to an orthopedic specialist and go from there.

To give you 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 number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.