You might wonder what an article on osteoporosis is doing in the VHL Family Forum. Isn’t that the disease of old women? Yes, it affects 28 million Americans, 80% of whom are women. However, young people, men, and especially people with VHL need to be concerned too.

Osteoporosis is the loss of calcium from the bones causing them to become thin or porous, weak and easily broken. Calcium is laid down in our bones only during our growing periods when we are young. It is very important for pregnant or nursing women and youngsters to get the recommended amount of calcium in their diets each day. As we age, there is a normal, unavoidable loss of calcium from our bones. If, while we were young, we obtained the recommended amounts and have stayed active, this normal loss of calcium should have a minimal effect on our bones.¹ It is important that everyone maintain a good calcium intake throughout life. (See Table 1).

The U.S. National Institutes of Health Recommend:
Age Group	Milligrams Calcium per Day
Infants: Birth to 6 months 6 months to 1 year	400 600
Children: 1 to 5 years 6 to 10 years 11 to 24 years	800 800-1,200 1,200-1,500
Men: 25 to 65 years Over 65 years	1,000 1,500
Women: 25 to 50 years Postmenopausal Taking Hormone Replacement Therapy (HRT) Not taking HRT Over 65 years Pregnant/nursing	1,000 1,000 1,500 1,500 1,200-1,500
Table 1: Source: NIH Consensus Development Panel on Optimal Calcium Intake

Along with the normal loss that occurs as a result of aging, a number of other things can contribute to the development of osteoporosis: inactivity, poor diet and prolonged steroid use. Exercise not only keeps the muscles strong, but also helps the bones maintain their strength. Weight bearing is the key.²

Prolonged use of steroid drugs has been shown to destroy bone.³ It is very likely that if you have VHL you will, at some time in your life, have a procedure which will involve the use of some steroids. Steroids may be used before, during or after brain or spinal surgery and some eye procedures to control swelling around the brain, spinal cord, and optic nerve. While these drugs are important tools in successfully recovering from these procedures, care must be taken to ensure against unwanted side effects later in life. Steroids are still the basis of anti-rejection treatment after kidney transplantation, and there is an enormous problem with osteoporosis worldwide among transplant recipients.

What constitutes "prolonged use"?

Five milligrams or more, per day, of a glucocorticoid steroid (Prednisone) for six months or more presents a big risk factor for steroid induced osteoporosis. Decadron, usually used during brain surgery, is 5 times stronger than prednisone (deltasone). Therefore, 1 mg of Decadron for one month or 5mg of prednisone for six months requires preventive therapy to avoid bone loss.

The symptoms of osteoporosis are often silent in the early stages but may include back pain, compression of the spinal column (loss of height) and easy fracture of bone, especially the wrist, shoulder or hip. Prevention and treatment would include a baseline bone density test, general risk factor reduction: no smoking or alcohol, increased calcium and vitamin D intakes and increased activity. In addition, if you are a postmenopausal woman then you will want to speak to your doctor about starting hormone replacement therapy (HRT).

Studies have proven that the use of 5-10 mg per day of a bisphosphonate called Fosamax, along with increased calcium intake, can prevent further bone loss.⁴ Actinol will soon be approved by the FDA.

Other treatments include new designer female hormones and a nasal spray. Ipriflavone, a non hormonal nutrient, has also been shown to inhibit the bone destroying actions of osteoclast and stimulate the activity of bone building cells, the osteoblast.⁵ Bone loss cannot be regained to previous, non osteoporosis levels but some bone can be regained.⁴ Treatment means to stop further loss. Short term steroid use is generally not a concern.

Aseptic necrosis is, however, a rare result of short term steroid use where blood vessels feeding bone are destroyed and as a result, the bone dies. This usually occurs in the hip resulting in the need for hip replacement. Unfortunately, there is no way to know who is susceptible to aseptic necrosis and preventive measures are not useful here.

So, what does all this mean?

It means that osteoporosis is preventable and treatable. It means that we all must get the recommended allowances of calcium in our diets each and every day. Doing this is easier than you think. There are many supplements on the market that contain calcium with other minerals and vitamins. I think foods high in calcium are a better way to go. All milk products are an excellent source of bone-building calcium–stick with the low fat or fat-free versions (see Table 2)^.6 Canned salmon (with the bones), dark green leafy vegetables like collard greens, kale and broccoli are good non-dairy sources of calcium. We can all do with more vegetables of every kind in our diets, as they can provide not only calcium but other minerals, fiber, vitamins, and phytochemicals. Finally, our bones, teeth and waistlines would thank us for replacing the soda in our diets with skim milk or juice fortified with calcium.

One Calcium-rich Serving of each of these foods provides about 250-400 mg Calcium:

1 c. skim or low-fat milk, or low-fat or nonfat yogurt

1-1/2 ounces cheese

1 cup calcium fortified juice

3 ounces canned sardines with bones

Table 2. From a fact sheet supported by a grant from the National Osteoporosis Foundation, 1150 17th St., N.W., Washington, D.C. 20036-4603, 800-223-9994.

Special thanks to Dr. Stanley Wallach, Endocrinologist at The Hospital for Joint Diseases, New York, and Dr. Hartmut P.H. Neumann, Nephrologist, Albert-Ludwigs University, Freiburg, Germany, for their assistance in writing this article.

1. Jane E. Brody, The NY Times, "Guidelines Offer an Earlier Blueprint for the Battle Against Bone Loss," 10/20/98

2. Susan Gilbert, The NY Times, "Weak Bones Among Men Are Linked to Estrogen," 12/08/98

3. Jane E. Brody, The NY Times, "Calcium Takes Its Place as a Superstar of Nutrients," 10/13/98

4. K.G. Saag et al (1998) N Engl J Med 339:292-9

5. Steve Love, Healthy Talk (a publication of The Vitamin Shoppe) Jan/Feb. 1999 "Ipriflavone: A New Non Hormonal Nutrient for Osteoporosis"

6. National Center for Nutrition and Dietetics Nutrition Fact Sheet-"Choose Calcium-Rich Foods for Strong Bones"

As printed in the VHL Family Forum 7:1, March 1999. For permission to reprint, please contact VHL Family Alliance, info@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.