My Personal Journey, Part 2

What Your Doctor May Not Tell You About Osteoporosis: Help Prevent-and Even Reverse-the Disease That Burdens Millions of Women
by Felicia Cosman, M.D.

(Page 2 of 2)

In assessing your risk of osteoporosis, you must be familiar with the medical history of your parents and grandparents. Many people think that if you have osteoporosis, it always means that you've lost a lot of bone. In fact, you might just have been born with very low bone mass. I'd like to be able to say that I started taking a pill and now everything's fine. That may be the case in a few years, but at the time, because I was so young and still premenopausal, there was very little that I could do about my discovery. In terms of general preventive measures, I had already begun taking calcium supplements and trying to modify my diet to contain enough total calcium. I had already embarked on an exercise program, including both jogging and strength training. I didn't smoke or consume excessive alcohol. I wasn't on any medication that could be altered. My periods were totally regular.

And since there weren't (and still aren't) medications proven safe or effective-or approved by the Food and Drug Administration (FDA)-for the treatment of otherwise healthy premenopausal women, I couldn't take any kind of miracle pill. With one exception (PTH or parathyroid hormone), the medications currently on the market work by returning the bone turnover process from the accelerated levels seen in postmenopausal women to the normal levels of premenopausal women. The drugs simply slow down the bone loss process. If bone turnover levels are in the normal premenopausal range to begin with, there is less of a potential effect that these medications could have on bone metabolism. In general, premenopausal women manifest little total skeletal bone loss until they reach the perimenopausal phase of life. So it's likely that these drugs wouldn't work so well in a healthy premenopausal woman.

The one possibility open to me was to try the oral contraceptive pill. There had been a few studies suggesting that women who took the pill had higher bone mass than women who did not. I also thought it might be wise to try the pill for other reasons-namely, its use in premenopausal women has been linked to a reduction in risk of ovarian cancer. I thought I could take care of two problems with one pill, but when I tried a few different preparations, they all left me nauseated and lethargic. I simply couldn't tolerate them. Furthermore, I was unlucky enough to require a breast biopsy about a year after all of this, and the open issue about whether oral contraceptive use might be associated with a small increase in the risk of breast cancer made me feel less sure of the option. Finally, the potentially positive bone effects of the pill were not, and are still not, proven.

So I was a healthy forty-year-old woman with osteoporosis and nothing to do except follow the preventive measures that all of us should be practicing anyway! It was obvious to me that when I reached menopause, I would need some type of medication, and probably should continue taking one for the rest of my life. There was no evidence that anything active was going on in my skeleton; it was likely that I happened to have been born with an extremely low bone mass, largely due to genetic factors. But I felt fine! Osteoporosis is a symptomless condition for many years or even decades. The major challenge at that point was to work on my psychology. Did it make sense to limit my activity to prevent fractures? No way. Not surprisingly, I had never had a fracture-fractures from osteoporosis are exceedingly rare in premenopausal women, even with low bone mass. I simply needed to forget about this until the time when my periods became irregular and continue doing what I was doing anyway. Of course, this was a bit hard to do considering that I was confronted daily with the often devastating consequences of the disease. Additionally, there is not a single day of my professional life that I don't look at one or more bone density test results.

Ultimately, this is why I am opposed to routine bone density screening in premenopausal women. (This does not mean that women with specific diseases or on certain medications should not be tested or treated. In otherwise healthy women, however, it should not be routinely done.) Many young women come to see me after a bone density test with results substantially higher than those I had. Some of them have been told they have severe “bone loss” and have already been put on medicines without proven efficacy or safety in their age group.

Some of these women may be having children in the near future, and the impact of these drugs on fetal development is unknown.

I am extremely sympathetic to these young women, since I know the fear they have to face. It is a true psychological challenge; I don't think that finding out about osteoporosis at an early age, when there's nothing you can do about it, is necessary or even healthy. Some people would argue that getting a test may help younger women stick with good preventive measures, but there is little evidence to support this argument, and it is hard to justify the cost of these tests in a medical system already overburdened with expenditures.

That said, it's imperative to find out about your osteoporosis risk at the time of menopause, or at the latest by the age of sixty to sixty-five. It would be irresponsible to be ignorant of a diagnosis for which treatment can dramatically modify the course of the disease. This is why I stress throughout the book that we should concentrate our diagnostic and treatment efforts on older individuals, in whom the probability of osteoporosis is much higher, the frequency of fracture occurrence is much higher, and the effectiveness of treatment has been tested and proven.

The fear and worry that I've personally experienced in my battle against osteoporosis have helped me generate a unique professional perspective and empathy for my patients. Humor, perspective, and the certain knowledge that there will be medications available when I need them are what help me cope with my condition. There is also comfort in knowing that I am doing everything I can at this stage, and will continue to do so in the future, to prevent myself from suffering from the consequences of osteoporosis. I fervently hope that readers of this book will come away with similar knowledge and comfort.

Copyright © 2003 by Felicia Cosman, M.D.

About the Author

FELICIA COSMAN, M.D., an osteoporosis specialist, is the clinical director of the National Osteoporosis Foundation, the medical director of the Clinical Research Center at Helen Hayes Hospital in West Haverstraw, N.Y., and associate professor of clinical medicine at Columbia University.