Third Quarterly Issue
Greetings from the editor
Welcome to the third edition of our newsletter. I am happy to say that so far all members who responded did so favorably.
Two men did not respond to either the introductory letters or the newsletter itself and have been removed from the mailing
list. Everyone else has said they want to continue receiving it.
Remember the purpose of the newsletter is to service your needs. So please let me know if we should include anything in
particular in future issues. Also, members still need to submit their case histories for the Member Profiles section of
upcoming issues. Just include a history of your problem, the diagnosis, treatment and effectiveness of treatment. I will send
you a copy of the write-up for approval before publication.
I am happy to report that we have our first two osteoporosis experts who have volunteered to answer questions from the
group. I have given them relevant previously submitted questions, plus some additional ones I have developed, to select
from. We currently have an endocrinologist and physical therapist who will be contributing to the January 1998 issue. If
you have thought of additional questions you would like me to submit, please call, write, or e-mail them to me. We
could still use the input of a diet/nutrition expert, so please continue looking for one willing to contribute.
What`s new?
I received e-mail from Dick Richards, a new member, in July requesting help from other Men`s Osteoporosis Support
Group members. Dick would like you to contact him to tell him the following information: 1) Are you taking Fosamax? 2)
Is it helping? 3) Does your insurance company pay for the medication?
Here is Dick`s problem. His HMO, Blue Shield of California, informed his physician that, "Currently the only FDA-approved indication for the usage of
Fosamax in osteoporosis is for the treatment of symptomatic post-menopausal women." Additionally, they stated, "These thresholds apply only for
women; appropriate criteria for men, in whom area bone density values are higher, require further research. In male patients with symptomatic
osteoporosis (i.e. atraumatic osteoporotic fracture), requests are reviewed on an individual basis. In the absence of fractures for this patient, the request
has been denied." He is paying $60 per month for Fosamax that he feels should be covered by his medical insurance. He hopes that by your answering
the above questions he will have some information that will help him convince the insurance company that his Fosamax costs should be covered. Here is
how to reach him. E-mail: RRich19425@aol.com.
I surely hope we will give Dick 100% cooperation with his problem. This is exactly what the support group was meant to do--support each other.
Thanks for all your help in advance from Dick and myself.
You may have received official notification recently about the National Osteoporosis Foundation`s new lace ribbon as a national symbol of
osteoporosis. I was concerned that the ribbon was completely feminine and thus another not so subtle way to overlook the problems of men with
osteoporosis. I expressed this concern in a letter to Sandra C. Raymond, Executive Director. She wrote a very nice response thanking me for conveying
my thoughts regarding the ribbon. She pledged continued support of efforts to raise awareness of the impact of osteoporosis on men. She also said, "In
the meantime, we will gauge reaction to the symbol and, while we continue to disseminate the ribbon, we will be vigilant with respect to men`s reaction
to it and be prepared to act accordingly." If you have feelings about the ribbon, you may want to call or write to express them.
As you all know, weight-bearing exercise is a critical component to bone health. I have recently developed some knee degenerative disease that I am
finding makes weight-bearing exercise more difficult. Walking is now painful and jogging is out of the question. If other of you are in the same
quandary, I want to share something I saw as a computerized medical update recently. A new medication, Hyalgan, has been approved by the FDA. This
medication contains hyaluronate, a natural viscoelastic modifying agent found in the knee joint that acts as a lubricant and shock absorber. Treatment
consists of injections administered directly into the knee over four weeks that may relieve pain for three to six months. Since this is a natural compound,
it appears to be completely safe. One study reported an apparent decrease in structural changes within the knee when Hyalgan was administered in early
degenerative disease. The medication is available in the United States from Sanofi Pharmaceuticals and its co-promotion partner OrthoLogic under a
licensing agreement with Fidia Pharmaceutical, an Italian company. There is some information available on the Internet if you have access. This sounds
promising and should definitely be discussed with your physician if you may be a candidate for therapy. Bring information with you because there is
nothing in the literature yet for your physician to refer to.
Nutrition and medication
Hormone supplements
Newspaper and magazine articles have appeared often mentioning hormone supplements such as DHEA (dehydroepiandrosterone), human growth
hormone, melatonin, and testosterone. Some have claimed that these hormones can make people feel young again and prevent aging. I hope to have a
future article about hormone supplements in this newsletter based upon a thorough search of the current literature. Until then, this brief summary from a
handout from the National Institute on Aging (NIA) should provide helpful information and guidance. You may get free publications from NIA by
calling 800-222-2225 or see their Website at http://www.nih.gov/nia.
The NIA report highlights the scarcity of literature from controlled studies to prove that these hormones make people feel younger or prevent aging.
Additionally, as over-the-counter medications, the Food and Drug Administration does not regulate them. Manufacturers may not produce them under
properly controlled circumstances, side effects are possible, and product labels may not even be accurate. Pills in the bottle may be of a different dosage
than that listed on the label. Consult your physician before taking these substances. Testosterone and human growth hormone can be taken under
medical supervision to increase medication safety.
Perhaps the most discussed over-the-counter hormone supplement for individuals with osteoporosis is DHEA. This
hormone is a precursor to estrogen
and testosterone produced by the adrenal glands. Studies have shown that DHEA production decreases after age 30, leading some to think supplements
are necessary. There is some evidence, however, to show that liver damage can occur even with brief doses. If increased DHEA causes higher
testosterone production, this could be a source of prostate cancer in men and a risk of heart disease in women.
In summary, studies have not proven a benefit for these hormones that outweighs any potential risk. The NIA explains that anyone taking DHEA should
realize that its effects are not fully understood and some may be harmful.
Medical factors in osteoporosis
Ultrasound bone mineral densitometry -
Recently an FDA panel recommended approval of the SAHARA Clinical Bone Sonometer with conditions. The SAHARA is an ultrasound device used
to test bone mineral density (BMD). This is only one of several ultrasound devices that are being tested for future introduction as BMD testing tools in
the U.S. market. Dr. Daniel T. Baran, a researcher testing ultrasound units, lectured at The Fourth International Symposium--Osteoporosis: Research
Advances and Clinical Applications. The National Osteoporosis Foundation sponsored this symposium in Washington, D.C. from June 4-7, 1997. Tapes
of the seminars and presentations are available from Chesapeake Audio/video Communications, Inc., 6330 Howard Lane, Elkridge, MD 21227, (410)
796-0440. The following is a summary of Dr. Baran`s discussion concerning using ultrasound units to diagnose osteoporosis and monitor results of its
treatment.
Approximately 75% of American women [and I presume men, Ed.] with osteoporosis are undiagnosed. One reason is the lack of inexpensive, readily
available, and portable devices to detect low bone mass. Quantitative ultrasound (QUS) devices attempt to meet the need for such diagnostic devices.
Several manufactures of QUS equipment have products being tested currently. At the time of Dr. Baran`s lecture the FDA had approved no QUS device
for clinical use. These units are completely portable, weigh about 13 pounds, and with a projected expense of $5.00 per test that takes one minute to
complete. Compare this with the size, weight, test time, and expense ($150) of dual-energy X-ray absorptiometry (DEXA), that we have all seen for
ourselves. The potential as a rapid inexpensive method to diagnose osteoporosis is readily apparent. Dr. Baran discussed 1) What does QUS measure? 2)
Do its measurements correlate with (BMD) measurement? 3) Do they predict fracture rates? 4) Can it be used as a screening tool?
In summary, QUS measures bone mineral content. It does this by placing the calcaneus (the heel bone) between two ultrasound transponders. One
generates the sound and one receives it. One of three methods measures the bone density: the broadband ultrasound attenuation (BUA) of the sound
wave as it passes through the bone, the speed of sound (SOS) measurement as it passes through bone, or an algorithm that combines both methods
(QUI). Osteoporotic bone will give decreased attenuation (blockage) of sound with the BUA method and faster speed transmission with the SOS method.
The opposite holds true for normally dense bone.
They have shown ultrasound correlates with BMD both in vitro and in vivo. One research project using 111 women showed that as spinal and hip bone
density decreased, so did QUS scores. Dr. Baran also did a research project on young healthy persons that showed QUS could discriminate between
these healthy individuals and fracture patients. Another study showed that women with spine and hip fractures also had decreased QUS scores. The one
area where they need more research is to decide if QUS can test the response to osteoporosis therapy.
Bone fracture is the most important outcome from osteoporosis. Diagnostic tests that predict fracture rates are extremely important because they could
single out this population for preventive therapy. QUS was used in a 7,000 patient study to follow elderly patients for several years. If the BMD
decreased by one standard deviation, hip fracture rates doubled and approximately the same relationship was found with QUS testing. Another study
even showed it predicted stress fracture rates in young healthy female military basic trainees.
A study on 420 peri-menopausal women compared DEXA and QUS. Thirty participants had osteoporosis (2.5 standard deviations from normal), but
none were aware of having the condition. When they compared BUA, SOS, and QUI to each other, QUI gave better test results and was used as the test
method of choice. Projecting the results of this study to 1,000 persons screened for osteoporosis, DEXA would cost $150,000 and QUS would cost
$5,000. A QUI test result of 111 would find all osteoporosis patients, but 67% of normal patients would fall in this range, too. This would be a savings of
$49,5000 compared to testing all persons with DEXA. If the QUI result were set at 89.2, they would have diagnosed 80% of the osteoporosis patients.
Twenty-five percent of the healthy persons would have had to take DEXA scans to find that they were healthy.
In summary, QUS has merit as a screening tool, but is not perfect. Other tests must be used on part of the population being screened. Its use should,
however, save considerable money and time while allowing rapid screening of individuals in physicians` offices and elsewhere.
The SAHARA Clinical Bone Sonometer is manufactured by Hologic, Inc., 590 Lincoln Street, Waltham, MA 02154, (617) 890-2300. E-mail for
marketing is marketing@hologic.com and the Web site URL is http://www.hologic.com/contact.html. When I checked their Internet information, I noted
the typical situation of never seeing the words "male" or "men" in any of their literature. I sent them e-mail explaining my thought that the QUS should
have important diagnostic implications for men as well as women. My suggestion was that their marketing efforts should include all people at risk for
osteoporosis--men and women. You may want to contact them, too.
Member profile
This 54-year-old member first developed right-sided thoracic spine pain in about 1981. It became apparent gradually that
the pain was made worse by activities that left the thoracic spine unsupported, which included work as a dentist. Diagnostic
tests, including X-rays, were negative for several years, although pain increased in intensity and duration. The back always
felt better in the morning and got worse as the day progressed or as the intensity of work increased.
In 1987, spinal X-rays revealed mainly right-sided osteophytes (bony outgrowths) of the thoracic spine. Some physical activity was limited to reduce
the pain at this time. In 1991, the pain became so intense that clinical dental duties had to be stopped and administrative work sought instead. X-rays
revealed a progression of the right-sided osteophytes. Additionally, in reviewing the diagnoses from those X-rays and one set taken in 1983, it was found
that the radiologist had noted apparent osteopenia at both times. Neither the radiologist nor referring physician followed up on that finding in either case.
No definite diagnosis was made, but the suggestion of early DISH (diffuse idiopathic skeletal hyperostosis) was put forth.
In the spring of 1994 the thoracic pain became quite severe. A local orthopaedist made the referral to a medical center spine clinic as he was concerned
about excessive spinal kyphosis. The medical center orthopaedic surgeon noted spinal compression fractures and osteopenia. A referral to endocrinology
led to the diagnosis of osteoporosis based upon BMD via DEXA that was about 2.5 standard deviations from that of normal young adults as well as the
presence of spinal compression fractures. Further testing detected hypothyroidism and hypogonadism, the latter which was felt to be primarily
responsible for the osteoporosis. Testosterone injections were started in December 1994 and Fosamax in February 1996. Additionally, this member
exercises 5-6 days per week including calisthenics and either jogging, walking, hiking, or biking.
A second DEXA scan after one year showed no progression of the osteoporosis, but no improvement either. A scan done in July 1997 showed
considerable improvement in lumbar BMD and no change in the hip BMD when compared to that of the young adult and previous DEXA results. The
information below shows the Z-scores and percent of young adult BMD for the lumbar spine for 1995 and 1997 and the improvement in Z-score from
1995 to 1997:
AREA `95% Z- 1995 `97% Z- 1997 Change
--------- ----- ---------- ----- ----------- ---------
L1-L2 79 -2.06 85 -1.55 +0.51
L1-L3 78 -1.96 88 -1.26 +0.7
L1-L4 76 -2.16 88 -1.22 +0.94
L2-L3 79 -2.16 89 -1.17 +0.99
L2-L4 77 -2.39 89 -1.13 +1.26
L3-L4 76 -2.39 91 -0.98 +1.41
This member has fully retired from dentistry and finds, in combination with treatment, that has led to improvement in symptoms. No problems have
resulted due to the Foxamax or any other medication he takes.
COMMENTS: While speaking to a prominent osteoporosis researcher about three years ago, he told me that even a five percent improvement in BMD
was quite significant and probably the most improvement to expect. This was before Fosamax was approved for treatment of the condition. It is quite
apparent that Fosamax led to a very great improvement in spinal BMD for this member--ranging from 6-15% in the regions shown. It is, however,
noteworthy that the same cannot be said for the hip. If this member`s response to therapy is representative, people must make every effort to retain hip
BMD as it may not be easily regained once lost. The fact that spinal osteopenia was noted on X-rays but not followed up by either the radiologist or
referring physician is significant. It should be mandatory that BMD testing is required whenever X-rays reveal apparent osteopenia. This is particularly
true since cheaper and quicker BMD tests, such as ultrasound, are now becoming available.
Ask the experts
Calcium supplements come in many varieties and in combination with various vitamins and trace elements--deciding which
to choose can be difficult. Are these additional vitamins and minerals helpful or not? For a thorough look into this subject, I
refer everyone to another tape from the previously mentioned symposium, "The Fourth International
Symposium--Osteoporosis: Research Advanced and Clinical Applications." Dr. Robert P. Heaney`s lecture, "Other
Nutrients: Impact on Bone Health and the Calcium Requirement," provides considerable insight on factors other than
calcium and vitamin D and how they might affect bone metabolism. The following is a brief summary of the salient features
of Dr. Heaney`s interesting discussion.
Calcium and vitamin D are the most important players in bone metabolism and their effects swamp those of the trace elements and other dietary factors
affecting bone growth. These include, magnesium, manganese, copper, zinc, vitamins C and K, sodium, protein, and acid ash in the diet. A brief
summary of how some of these might be implicated in bone health follows.
Evidence suggests that trace elements and vitamins affect BMD but the connection is not particularly strong concerning osteoporosis. Research directly
relates only one vitamin or trace element to osteoporosis--vitamin D. Magnesium is a factor in secondary osteoporosis such as from malabsorption
syndrome. A recent study looked at manganese, copper and zinc and found that only the addition of calcium to the diet gave a statistically significant
improvement in BMD to participants. The participants taking the trace elements along with calcium supplements did, however, have a tendency toward
increased BMD. Additionally, copper-deficient diets in sheep will produce a disease like osteoporosis. The body needs copper for collagen cross linking
and collagen acts as the matrix for bone formation. The more highly cross-linked the collagen, the greater is the structural strength of bone. Studies,
nevertheless, show no direct link between decreased copper levels and osteoporosis in humans. Vitamin K is present in decreased levels in elderly
patients with osteoporosis. This is probably the result of malnutrition rather than a direct effect on bone growth. Magnesium may affect the way the
parathyroid responds to serum stimulators. In the presence of very low serum magnesium, the entire calcium regulatory system may be completely
disabled. Contrary to popular opinion, magnesium is not, however, important for calcium absorption. One recent study did show that participants in the
lowest quartile of magnesium intake were in the lowest quartile of BMD, too.
So, there is some evidence to implicate these nutrients in osteoporosis, but none that is conclusive yet. Until all the data is in, Dr. Heaney suggests that
the best way to assure an adequate intake of calcium and trace elements is a good healthy diet. For example, milk has calcium, potassium, magnesium,
zinc, and vitamin D.
The most important item concerning calcium balance is not necessarily the amount ingested. Urinary excretion of calcium is probably a better
determinant of bone health. Protein, sodium, and acid ash foods increase the loss of calcium in the urine. For every additional gram of protein ingested,
urinary calcium increases 1 mg. For every 2300 mg of sodium ingested, urinary calcium increases by 20-60 mg. Dr. Heaney points out that the body has
compensatory mechanisms that allow it to cope with variations in protein and sodium intake unless calcium intake is too low. In countries with low
protein and sodium intake, dietary calcium requirements may be only 500 mg a day. In this country, due to increased protein and sodium consumption,
2000 mg of calcium a day may be needed to sustain bone health. Unfortunately, studies have shown that American`s calcium consumption is closer to
500 mg than 2000 mg.
The strongest predictor of survivability after hip fracture is serum albumin level. This is essentially a marker for protein intake. In elderly individuals
that are malnourished, adequate protein intake is critical to healing after bone fracture. Even in a hospital environment, it has been shown that patients`
serum albumin levels often decrease. The hospital food may be adequate in nutrients, but the patients do not eat it. Protein supplements (shakes, drinks,
and the like) become critical for the well being of hip fracture patients. Studies show a much improved outlook for patients given a protein supplement
drink each night during their hospital stay after hip fracture.
In summary, calcium and vitamin D are the two most important nutrients that affect bone metabolism. Excess protein and sodium intake cause an
obligatory calcium loss from bones to which the body can adapt only if calcium intake is sufficient. Zinc, copper and vitamin K are the micro nutrients
most strongly associated with osteoporosis but their role is unproven. Magnesium is important in malabsorption syndrome but is not required for calcium
absorption. The best strategy to deal with the unknown importance of all the trace elements is to eat a healthy diet that contains them naturally.
Osteoporosis on the Internet
The osteoporosis section of the Doctor`s Guide to Information and Resources is at
http://www.pslgroup.com/osteoporosis.htm. Although apparently dedicated to physicians, the information is not too
technical for lay persons either. The osteoporosis section consists of about 25 osteoporosis articles that have made news in
the last few months. Some topics include, "Studies Show Soy Protein May Prevent, Treat Bone Loss," "Study Finds
Promising Treatment for Bone Loss," "Fosamax Gains FDA Clearance to Prevent Osteoporosis and Its Fractures." Click on
the topic and find a one- or two-page report on the subject. The information appears accurate and concise and may
mention the journal if it is a research finding. It does not give a complete reference by author`s name, journal title, date, etc.,
which would be ideal.
If you click on the Site Map icon at the top of the page, there is a complete outline of everything covered. This includes
Medical News, Alerts, Other News, Journal Club Reviews, Today`s Non-Medical News, Headlines, and most important,
Patient Information and Resources. They cover eighteen medical problems here including osteoporosis, elevated
cholesterol, enlarged prostate (BPH), insomnia, etc. To see how valuable these other resources might be, I checked the
elevated cholesterol subject. My wife has recently had a couple of blood tests that both showed elevated cholesterol.
Anyone living in this era knows that high cholesterol is not good. The questions are how high is bad and when do you treat?
I did not expect to find answers for those questions, but was pleasantly surprised when I did find them. They titled one
article, "Identifying Patients Who Can Benefit From Cholesterol Lowering Drugs." The article cited several large studies
that showed lowering cholesterol of heart disease patients, even those with average cholesterol levels, is beneficial. There
was even a reference to a new diagnostic test to check whether calcified coronary vessel plaques have formed due to
elevated cholesterol levels.
Imatron, Inc. is a company that developed the Ultrafast CT(R), a non-invasive test to detect and quantify calcium in the
coronary arteries. The Ultrafast CT(R) may be an ideal diagnostic test for individuals with elevated cholesterol. It is
non-invasive with reported adequate accuracy. A low calcium score would show little need for concern by the patient. A
high score would show that they need aggressive cholesterol-lowering therapy.
What are the best medications to treat high cholesterol, if needed? Unbelievably, this Web Site also has an article entitled,
"Study Finds Fluvastin Most Effective Treatment for High Cholesterol." The article goes on to explain how the Fluvastatin
(lescol), although cheaper than others in the study, gave a better outcome. This is just the type of information I like to have
when I am discussing treatment possibilities with my physician. The Doctor`s Guide to Information and Resources should
be one of the first Web Sites you check. It is loaded with useful information on osteoporosis and medicine.
Thankfully, I did not need all the information this Web Site supplied. Although my wife`s total cholesterol was high, here
HDL (the good guys) was so high that the overall ratio was really excellent. No treatment was needed and she is supposed
to live until age 120 or so. I am not sure my retirement planning took this into account. I learned a lot throughout the entire
process-both on the Internet and at the physician`s office.
I would also suggest that you check out the Lunar Corporation Web Site with particular emphasis toward subscribing to the
LunarNews. Lunar makes bone densitometry equipment. The Lunar News is a very informative free newsletter directed
toward physicians. Some data may be too technical, but there will be a lot of useful information, too. To request the
LunarNews, send e-mail to LunarNews@lunarcorp.com. Another option is to view or print the newsletter while online at
http://www.lunarcorp.com/LunarNews.htm. Or, contact them at Lunar Corporation, 313 West Beltline Highway, Madison,
Wisconsin 53713, (608) 274-2663.
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 your physician has prescribed.
Although we attempt 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
