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Newsletter #1

Men`s Osteoporosis Support Group
Volume I, Issue 1 April 1, 1997

Premier Issue

Greetings from the editor

After several letters, e-mails, and phone calls, the initial issue of the Men`s Osteoporosis Support Group`s newsletter is finally here. Thanks to the National Osteoporosis Foundation for coordinating the names of men in the group. Thanks also to everyone who submitted the case histories of their experience with osteoporosis and for sending questions that we can submit to the experts. If you have not submitted your questions or case history yet, it is not too late. I am looking forward to answers that we can publish in future newsletters that will be informative and helpful for our members. Remember that the purpose of this newsletter is to provide a means of communication between members of the support group. It will only be helpful if you keep me informed about your questions and concerns.

I would like to define the area of our interest in this initial newsletter. Our discussions will mainly evolve around osteoporosis and osteomalacia. Osteoporosis literally means "porous bones." A lack of calcium or other bone minerals could cause this condition or it could be a problem with the organic components of bone. Osteomalacia is a softening of bones caused purely by a lack of calcium in them. Although grouping osteoporosis and osteomalacia together may not always be correct, this will often be done to simplify matters.

The contents of the newsletter are subject to change. If you feel that an area should be added, subtracted or modified, just let me know. I will not promise I will adopt all your suggestions, but I will look at them. We plan these topics for discussion in upcoming issues.

1. What`s new? This will highlight any recent research or other findings that are important to males with osteoporosis.

2. Coverage of medical aspects of osteoporosis. This will highlight some medical conditions or risk factors for osteoporosis and cover them in some detail. The intent is to uncover as much information as possible about osteoporosis causes, risk factors, and medical treatment, both for our information and to provide preventive information for others.

3. Coverage of nutritional and medicinal aspects of osteoporosis. Several risk and treatment factors related to nutrition and drugs that will be highlighted here. Covered in this section will be such items as calcium and vitamin supplements, which to take, correct dosages, toxicity concerns, etc. Natural remedies will be examined to see if any have been proven effective or dangerous.

4. A profile of a support group member`s case history. This will highlight the member`s experience with osteoporosis. Initial problems, diagnosis, treatment and outcomes will be covered. This should provide interesting information as to the variable causes and treatments for osteoporosis.

5. Answers from the experts to questions we have submitted. It is possible that these answers will be covered in discussions in other topics. When they are a completely separate topic, they will be discussed here.

6. Osteoporosis on the Internet. A look at the vast amount of osteoporosis information available on the World Wide Web.

7. Miscellaneous. This area will cover such items as diagnostic instruments (bone densitometers), drug reports from manufacturers, and journal abstracts of noteworthy recent or historical research articles.

What`s new?

During a recent visit to one of my physicians, he informed me that the consulting rheumatologist was suggesting that Fosamax be taken in a cyclic or alternating dosage. He suggested taking the Fosamax for three months and then no medication for one month. This alternative cycle would then be repeated indefinitely. Fosamax, a biphosphonate, is the only drug of this type recommended to be taken continuously. Some of the biphosphonates have been used in Europe to treat osteoporosis for quite some time with the alternating regimen. It was my understanding that Fosamax had been shown to be safe without alternating the dosage. I have reviewed abstracts from several long-term research projects on humans and dogs and see nothing but excellent results with Fosamax. Other than the gastric problems from lying down after taking the pill, it appears extremely safe and well tolerated. The increased bone mineral density appears to continue to accumulate year after year due to the decreased bone resorption caused by Fosamax.

I have tried to find out if there is a scientific basis for the alternating dosage and have not uncovered one yet. Some speaker at an orthopedic convention may have suggested the alternating method and physicians present at the meeting are passing it around. We don`t know if this recommendation is based upon research results or just the speaker`s opinion. Until we get verification from Merck or other knowledgeable sources, take Fosamax according to the manufacturer`s recommendations. If you get additional information on this topic, please write or call me so we can include it in a newsletter.

Medical factors in osteoporosis

We have all read about the classical causes of osteoporosis in women--particularly the problems caused by decreased estrogen production after menopause. But men have different causes for osteoporosis, some of these you may not even be aware of. One of our members, H. D. Neuman, has submitted an interesting paper covering the genetic disease Klinefelter`s Syndrome which follows.

Klinefelter`s Syndrome (KS) is an ailment that affects about one in 1,000 males by adding additional sex chromosomes. It was first noticed in 1934 and described by Harry F. Klinefelter in the 1940s. The normal male and female have twenty-two pair of autosomes and two sex chromosomes: "XX" for the female and "XY" for the male. They are designated as 46,XX and 46,XY respectively. Standard KS has one extra female chromosome for a count of 47,XXY. There are rare cases with even different chromosomal make up that will not be discussed in this article.

The cause of KS has not been positively established. There is some indication that later maternal age or hypothyroidism may be responsible. It is not, however a new disease caused by environmental pollution or nuclear testing. In fact, the Egyptian Pharaoh, Tutankhamen, is suspected of having suffered from it.

The extra chromosome causes a number of aberrations. Sterility is nearly always present and male testosterone production is reduced, causing a delayed onset of puberty. Individuals with KS are also at risk for two diseases normally associated with women: osteoporosis and breast cancer.

On average, individuals are taller than normal males due to increased leg length. This difference is apparent from early childhood on. There does not, however, appear to be any tendency for increased arm length. Subjects also tend to weigh less than average and have reduced muscle mass.

KS individuals have the following symptoms that sometimes occur and in varying degrees: an impaired short term memory; gynecomastia (excessive development of male mammary glands, even to the functional state); frequent respiratory tract problems; impaired hearing for one or more frequencies; myopic refraction; heart malformations and diseases; undersized penis; testes retention; defective development and testes retention in adolescents; varicose veins and hypostatic leg ulcerations; neurological disorders; lowered intelligence; lowered sexual activity; lack of endurance.

Besides the above, psychological symptoms consisting of the following are also known to occur: low self esteem; shyness; poor facial expression; speech problems; passivity; lack of drive; lack of liveliness; lack of interest in school work; lack of self-confidence; concentration difficulties; a tendency toward criminality; especially dependent on parents; overly concerned with physical appearance. There can be a total lack of defiance reactions in childhood. An important Danish study in 1988 described the syndrome in 59 young men all under the age of twenty-five(1). Sixty-three percent of these young men had been referred for psychological treatment.

As this is a sexually related problem, there is some evidence of homosexuality associated with it. The incidence of transvestitism, or transsexualism is unknown.

At this point, the only treatments prescribed are testosterone injections or patches, calcium, and Fosamax, all of which are to counter the effects of osteoporosis. The sterility cannot be reversed, however, the testosterone can be effective in restoring sexual activity, further physical development that may have been repressed, and better regulation of body functions such as elimination and body temperature.

1. Klinefelter`s Syndrome in Childhood, Adolescence and Youth, Sorensen, K, Carnforth: Parthenon, 1988.

Nutrition and medications

Probably the most commonly prescribed medication for all people with osteoporosis is calcium. Men need from 1,000-1,500 mg per day either in their diet or with supplements. It seems a simple matter just to go to the local grocery, pharmacy or convenience store, purchase some calcium supplements, and take some whenever wanted. Life is never quite that simple. There are questions of correct dosage, the maximum dose to take at any one time, possible over dosage, and even the possibility of lead poisoning from ingesting too much of the wrong kind of calcium supplement. The KISS principle (keep it simple stupid) is one that is near and dear to my heart. Rather than rewrite the book on calcium supplements, I suggest getting a copy of the March 1997 Prevention magazine at the bookstore or library. Additionally, those with a computer and access to the World Wide Web can review some of the Web Sites mentioned later in this newsletter. The following is a summary of some important information about calcium supplements you will find in the above references.

PRODUCT TYPE:

A refined calcium carbonate product is the cheapest, has the highest concentration of calcium, and is the lowest in lead content. Its only potential problems are that it should be taken at meal time and it may not be fully absorbed in individuals with low stomach acid or who have ingested large amounts of wheat fiber with it.

Natural calcium carbonates (bone meal, oyster shell, dolomite) have the highest lead content and lower calcium content. Read the product label to find the source of the calcium. If in doubt, ask the pharmacist to explain the exact calcium source. Lead content is of most concern to children, but for others who want to keep the lead content of their calcium supplement low, here are some products to choose from.

The Natural Resources Defense Council, Inc. tested several calcium supplements for lead content. Posture-D High Potency Calcium with Vitamin D from Whitehall Laboratories, Inc., and Tums 500 Calcium Supplement, Chewable from SmithKline Beecham Consumer Healthcare LP had the lowest lead content at 0.23 and 0.15 micrograms of lead per single dose. Additionally, Nutrition Headquarters, One Nutrition Plaza, Carbondale, IL 62901, sells Low Lead Calcium with Vitamin D, item #14368, that is certified to contain less than 1 PPM of lead.

Calcium citrate is more expensive, has little chance of causing kidney stones, has low lead content, and is well absorbed even if taken between meals. This is the supplement of choice if you are older, worried about kidney stones, and don`t mind paying a premium for a premium product.

PRODUCT DOSAGE:

Read labels carefully, calcium content may be hard to figure. Be sure that you are getting the amount of available calcium desired. The bottle should have either the mg of calcium or the %Daily Value. The correct dosage is up to 1,500 mg of calcium and up to 150% of Daily Value. If that information is not obvious from reading the bottle label, do not buy it.

WHEN AND HOW MUCH?

Males up to age 65 should have 1,000 mg of calcium and after age 65, 1,500 mg is recommended. Limit dosages to no more than 500 mg at a time. If more than one 500 mg supplement is needed per day, then multiple doses are required. Calcium carbonates should be taken with meals as they dissolve in the stomach acid. Calcium citrate can be taken between meals since it does not need acid to dissolve. It is best not to take the calcium supplement with other medications without first consulting your physician or pharmacist to prevent drug interactions.

Do not take more than 2,000 mg per day as an excess can cause kidney stones and other problems. This is particularly true for calcium carbonate--calcium citrate is not so prone to cause stones.

WHAT OTHER SUPPLEMENTS TO TAKE

Magnesium, up to 400 mg, zinc up to 15 mg and boron, up to 3 mg can be taken with the calcium supplements or separately, if desired. Up to 400 IU. of Vitamin D per day should be included with the calcium supplement to assure best bone utilization of the calcium. Very large doses of Vitamin D can cause serious side effects, so read labels carefully. Daily doses of as little as 800-1000 I.U. of vitamin D can cause toxic side effects. Remember, the body can manufacture its own Vitamin D from sunshine. If you are on large doses of Vitamin D, your physician should be monitoring your response carefully to assure that toxicity is not occurring.

DIETARY CALCIUM INTAKE

Actually, the best source of calcium is from foods. Although dairy products are promoted for their high calcium content, there are many non-dairy foods that are also good sources of calcium. You should probably vary the dietary source of calcium to insure the highest level of calcium available for bone formation. Here are some of the best non-dairy sources of dietary calcium:

ITEM SIZE CALCIUM

Tofu 4 oz 120-765 mg

Collard greens 1 cup 357 mg

Blackstrap Molasses 2 Tbsp 274 mg

Orange juice

(fortified w/ Ca++) 8 oz 240 mg

Cereal (fortified) 1 cup 200 mg

Canned salmon

(with bones) 3 oz 181 mg

Kale, cooked 1 cup 179 mg

Sesame seeds 2 Tbsp 176 mg

Bok choy, cooked 1 cup 158 mg

Figs 5 med. 135 mg

Navy beans 1 cup 128 mg

Broccoli, cooked 1 cup 94 mg

Here are some dairy sources of calcium.

ITEM SIZE CALCIUM

Milk 1 cup 300 mg

Yogurt 1 cup 250 mg

Mozzarella cheese 1 oz 183 mg

Cottage cheese 1 cup 138 mg

Sources: Mayo Clinic Health Letter, May 1995 and Simply Vegan: Quick Vegetarian Meals, by Debra Wasserman and Nutrition Section by Reed Mangels, PhD, RD.

OTHER CONSIDERATIONS

Calcium absorption is affected by iron, aluminum-containing antacids, wheat bran, and oxalic and phytic acids that are in spinach. If your diet contains a lot of these elements, take calcium citrate between meals so calcium absorption will not be a concern.

Member profile

This member had a bleeding ulcer first noticed in 1945. This continued periodically until 1959 when 80% of the stomach was removed during emergency surgery. The vagus nerve was cut and the remnants of the stomach reattached to the downstream side of the duodenum. The result of this was the loss of intrinsic factor which serves to absorb Vitamins D and B-12 from the gut into the blood stream.

Vitamin D is needed for the transport and conversion of calcium. The loss of Vitamin B-12 results in degeneration of the spinal cord and distal neuropathy (numbing of the extremities of the feet and fingers). The advent of lactose intolerance further diminishes the intake of calcium. The loss of the vagus nerve results in disease of the gall bladder. The loss of the stomach results in dumping syndrome which accelerates the passage of food through the system and less absorption of nutrients.

The end result of this is osteomalacia, a condition in which there is bone loss and less calcium in the muscles. This condition can be stabilized by taking calcium and Vitamin D by mouth and Vitamin B-12 by injection every month. Bone densitometry is done every two years along with periodic blood tests. The most recent bone density averages done at age 73 showed 85% of normal for a 73 year old.

This member has tried Fosamax and Calcitonin but congestive heart failure and treatment for other medical conditions requiring medications prevent long term use of these medications.

COMMENTS: This profile presents an etiology of osteoporosis that has definite cause and effect relationships. In speaking to some of our members, the cause of their problem is unknown, undiscovered, or just idiopathic. Members should "bug" their physicians to have them find the cause of their osteoporosis as much as is possible. Fosamax will probably help in almost any instance, but if the underlying cause of the problem can be corrected, too, Fosamax should be even more effective.

Ask the Experts

Nothing available at this time. If you are seeing an expert who would be willing to volunteer to answer member`s questions, please let me know.

Here are some sample questions that we would like to submit.

1. Several dietary risk factors exist for osteoporosis, excess wheat bran intake, excess soda pop ingestion, excess animal protein ingestion, and excess alcohol use. How significant are these either alone or all together?

2. Have any patients been brought up to standard bone mineral density by taking Fosamax? If so, is there a different maintenance dosage for them?

3. Fosamax is only taken in the A.M., why? Would A.M. and P.M. dosages provide increased bone mineral density?

4. An inexpensive and quick bone mineral density test would be ideal. What research is being done to develop such a test?

5. A thorough report of the toxicity of Vitamin D is needed.

6. How does one interpret a bone densitometry chart? Are there true bone mineral density norms for males or are they just a conjecture from those developed from females?

7. Is anything being done to have insurance companies pay for male bone density testing?

8. What are the safety concerns with testosterone injection or patch therapy? How great is the risk of prostate or other cancer, for example?

9. Are there studies showing any ethnic or geographic populations being relatively immune to osteoporosis? If so, are there any plausible reasons?

10. What are the experts recommending concerning DHEA or other natural osteoporosis treatments?

11. What is the current state of calcitonin for treatment of osteoporosis. When and for whom is it recommended? Why would it be used along with or in lieu of Fosamax?

12. What forms of exercise are most recommended to prevent and treat osteoporosis?

13. What is the current state of the art concerning electrostimulus for healing broken bones?

14. What is the exact relationship between wheat bran ingestion and lack of calcium absorption? How much bran would be needed to completely prevent absorption of a 500 mg calcium supplement?

Osteoporosis on the Internet

There is a wealth of information about osteoporosis on the Internet. If you have a computer and access to an Internet Service Provider, you should be "surfing the Web" to gain more knowledge about osteoporosis. The simplest way to look for information is to use one of the search engines after typing in the word "osteoporosis." You will find dozens of osteoporosis sites. I want to just highlight one or two with each newsletter that are particularly useful.

The first two sites to be discussed are on the World Wide Web (WWW). They can be found at http://www.nof.org/ (The National Osteoporosis Foundation) and http://www.osteo.org/index.html (Osteoporosis and Related Bone Diseases~National Resource Center). These sites include extensive information on the causes and treatments for osteoporosis and many other bone diseases. There is direct information available about males with osteoporosis or there are many links provided to other sites that contain such information.

There is a comprehensive look at the need for calcium in osteoporosis at the Osteoporosis and Related Bone Diseases~National Resource Center (ORBD~NRC) site. This should answer just about any questions you might have about this topic.

About the only thing missing from these two sites is the ability to post questions to the experts and to see there subsequent answers. There are Web sites available that do have Ask the Experts sections. They will be discussed in later newsletters. Both sites do, however, list their addresses and phone numbers. Additionally, an e-mail address is available at ORBD~NRC.

In summary, these are two excellent sources of information about osteoporosis. If you can`t find what you are looking for at these sites, or on the links they provide, it probably is not on the Web.

Miscellaneous

In September 1994, an article was published in the Journal of Clinical Endocrinology and Metabolism (2) that has interesting implications for both men and women with osteoporosis. The title of the article, "Premature Graying of Hair Is a Risk Marker for Osteopenia," sums up the topic quite well.

The study compares 36 men and women with premature graying of hair and osteopenia to 27 men and women without osteopenia or prematurely gray hair. All subjects came from the same metabolic bone clinic. Patients were excluded from the study if they had taken estrogen after menopause, had a history of tobacco use, diabetes, current of history of thyroid disease, chronic exposure to corticosteroids, or any other possible osteoporosis risk factors.

Patients were considered prematurely gray if their hair had turned more than 50% gray before age 40. These were sub-divided into early and late premature graying according to whether they grayed before or after age 30.

The results showed that subjects with osteopenia and premature graying in their teens and twenties had a stronger family history of osteoporosis than those who had osteopenia and graying later in their thirties. Subjects with premature graying were 4.4 times as likely to have osteopenia as subjects without premature graying.

The authors felt that the association between premature graying and low bone mass could be related to genes that control peak bone mass or factors that regulate bone turnover. They concluded that premature graying of hair may be an important risk marker for osteopenia.

COMMENTS: All of us agree that prevention of osteoporosis is more desirable that treating it after it occurs. This study may point to at least one sub-population where prevention may be possible. These very early prematurely gray individuals should be warned to be extra cautious about the possibility for osteoporosis, particularly if there is also a family trait toward the disease. If their osteopenia is detected early, they may be able to receive conservative treatment in terms of mineral supplements, exercise, and diet therapy to prevent eventual fractures. Or, they may receive more aggressive drug intervention before fractures occur.

2. Rosen CJ, Holick MF, Millard PS: Premature Graying of Hair Is a Risk Marker for Osteopenia, Journal of Clinical Endocrinology and Metabolism, Vol. 29, No. 3, Sept, 1994.

Disclaimer. Diagnosis and treatment of osteoporosis are the responsibility of the patient and his or her physician. Nothing in this newsletter is to be interpreted as a recommendation for treatment or to change treatment that has been prescribed by your physician. Although every effort is made to assure that information in this newsletter is factual, errors will occur. It is the responsibility of the reader to verify that information they are acting on is factual. There is no relationship between this newsletter and any national osteoporosis group, including the National Osteoporosis Foundation. All references to any such groups are for informational purposes only.

EDITOR

Jerome C. Donnelly

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