Suggestions for men newly diagnosed with osteoporosis

Thanks to John Barczyk, jbwildstar@aol.com,  for suggesting that this page be added to the men's support group Web site and then for providing many valuable ideas and much constructive criticism of the information provided.  John says that he is not an expert, only a person with the disease who wants to help.  Also, thanks to Bruce Jacobson for his review of the information and constructive criticism.

Update as of 6/6/06

There are two articles on this Website concerning osteonecrosis of the jaws which has become an issue since this page was first published to the site. Although it appears at this time that osteonecrosis is occurring very rarely in people taking oral bisphosphonates, I want men who are newly diagnosed with osteoporosis to understand how to prevent this problem. See: Update one and Update two. Basically, it appears to be sound advice for anyone taking oral bisphosphonates to be very careful about their dental health. So read and follow the advice in Update two to reduce what is already a very low risk for jaw osteonecrosis to even lower levels.

DON'T PANIC

1.  That's right, don't panic.  You aren't alone, about 20% of all osteoporosis cases are in men.  As you've found, there is even an osteoporosis support group of men if you need their help, advice, or counsel.

2. Osteoporosis is treatable with several medications now available, and more coming all the time.

3.  You should normally be able to regain all or part of your lost bone mineral density (BMD).

4.  Don't try to blame yourself or anyone else, often the cause isn't known or is totally out of your control.  If you've caused some damage due to excess smoking, drinking, improper dietary habits, etc., it's not too late to change your ways.  You can't do anything about the past, but you can improve your future.

5.  Be extremely thankful that you were diagnosed now and not just a few short years ago when medications were not available to effectively treat osteoporosis.  You are indeed a lucky man to find you have osteoporosis now--it is treatable.

6.  If you have had a fracture already and are in pain, there are several treatments available for that now, too. Click here for details.

Top-ten list of things to do now that you have osteoporosis

1.  See a medical specialist in osteoporosis for a thorough diagnosis to find the cause and to effectively treat your osteoporosis.

2.  Get adequate calcium and vitamin D either through diet or supplements as recommended by your physician.  

3.  Although men should get adequate calcium, there is some concern that too much calcium places them at greater risk for prostate cancer, so don't eat uncontrolled amounts of calcium daily.  From 1200-1500 mg is adequate for most diets and most men, but check with your physician to be sure how much you need.

4.  Read labels to become aware of calcium content of various foods to assure yourself of enough, yet not too much calcium intake daily.

5.  Be sure you know your fracture risk based upon your T-score.  Take proper precautions to avoid a fracture based upon that risk level.

6.  Alcohol should be taken in moderation only.  One or two ounces per day appears to improve bone health, more than that appears to put men at risk for osteoporosis.

7.  Smoking is a risk factor for osteoporosis--not to mention a lot of other diseases, too.  Stop smoking.

8.  Educate yourself about osteoporosis, the many good osteoporosis books and the Internet make that easy today.  

9.  Don't believe everything you read or hear, and, if in doubt, ask your physician to be sure you have sound information to follow.

10.   Exercise is good for the bones.  Don't wait, get good advice from your physician or physical therapist and start a program designed to promote healthy bones.

More detailed information on the above points

For the man who has just been diagnosed with osteoporosis, the first thing is not to panic. Just a few short years ago there was little that could be done for you, but now there are several effective and clinically proven medications that will regain lost bone mineral density (BMD). Thus, the most important thing is to learn about the diagnosis and treatment of osteoporosis so you will be confident you are receiving the finest treatment possible for your problem. Here is what I recommend to educate yourself.  (Note that you must accept responsibility for seeing a competent physician who will thoroughly diagnose your condition and effectively treat it.  Nothing on this page is to be regarded as medical advice, but this information is only provided in an effort to help you understand osteoporosis, how it is diagnosed, and how it is treated.  If any information provided here might apply to your case, discuss it with your physician to see if he/she agrees with it.)

First, the Men’s Osteoporosis Support Group Web site,http://www.maleosteoporosis.org has copies of all the newsletters that explore recent updates in osteoporosis, and these include answers from the experts to questions that members have had. Additionally, there are reviews of books that should be helpful and informative, and references to literature that you might want to get as a resource on osteoporosis. There are links there to other osteoporosis Web sites where you can get additional information, too. The Web site has the FreeFind search engine so you can narrow down your search for a topic by entering a term into the search block. When you get to a pertinent Web page using FreeFind, then go to the Edit, Find menu, or on the keyboard hit Ctrl-F. Then reenter the word you used in FreeFind into the Find menu that pops up to go directly to that word on the Web page. This method will save you lots of time searching an entire document for the topic you are interested in.  Additionally, you can join the Men's Osteoporosis Support Group if you would like to be able to contact other men with osteoporosis.

Second, I highly recommend Strong Women, Strong Bones as a layman’s guide to information about osteoporosis for both men and women, and as an excellent guide for exercises to retain or build BMD. For more information see http://www.strongwomen.com. See my review of this book in the July 2000 Newsletter source of medical information directed to medical care providers, but also very informative for the layman, I recommend Endocrinology and Metabolism Clinics of North America, Volume 27, Number 2, June 1998 and a new March 2003 edition of the same journal, Volume 32, Number 1, that is devoted to osteoporosis. And, there is a another journal, Clinical Cornerstone, that published an excellent review of many aspects of osteoporosis that you might want to keep as a reference. See, Clinical Cornerstone 2000;2(6):1-51. This includes such topics as epidemiology, diagnosis, prevention and treatment of osteoporosis, and osteoporosis in older men.

Third, I find the National Library of Medicine PubMed Web site to be absolutely invaluable as a means of finding the latest research information on osteoporosis, or any other medical condition you are interested in, for that matter. This site is at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi and is like other search engines in that you just type in the relevant word(s) into the search block and hit the enter key or click on Go. You will find a list of abstracts that will contain that word or words. As you look through the abstracts, if you find one that seems particularly pertinent, click on the Related Articles link on the right to bring up other abstracts on that subject. If you need to read the entire article, you can order it on line for a fee, or print out the abstract and take it to your local library and ask for free copies from the National Library of Medicine.  Often now you will see an icon pop up near the top of the abstract showing that that journal has free full-text articles available.  Just click on the icon to read or print the entire article.

There are some facts and observations that I will provide here to save you from looking up as they often become questions for someone just diagnosed with osteoporosis.

1. Your risk of a fracture is important because you want to know how careful you have to be to avoid a potentially serious hip or spinal fracture. From Clinical Cornerstone 2000;2(6):22_23, Smith J and Shoukri K. P.23, the authors state: "Depending on the skeletal site, each S.D. reduction of BMD below young adult normal values is associated with 1.5-2.6-fold increase in patient's risk for fracture." I interpret this to mean that if your dual-energy X-ray absorptiometry (DXA) T-Score is -2.5 S.D. from the normal young adult, you are up to 6.5 times more likely to break a bone from a fall than a normal young adult.

2. It is important to find the source of your osteoporosis through proper diagnostic testing. There is good coverage of diagnostic testing in the National Osteoporosis Foundation (NOF) publication, Osteoporosis, Clinical Updates, Volume II, Issue 1, September 1999 (or look for later editions as they are published). This periodical is provided mainly for medical practitioners, but you might be able to get a copy by contacting NOF. One important segment concerns what tests should be done by physicians to evaluate and properly diagnose a man who is suspected of having osteoporosis. You might want to see that you have had all the tests they suggest, which include : Hemoglobin and hematocrit; serum calcium, albumin, phosphate, alkaline phosphatase; serum 25-hydroxyvitamin D; testosterone and LH; TSH; SPEP (if anemic); 24-hour urine collection for calcium; bone mineral densitometry (spine and hip); spine X-rays if fractures are suspected; bone biopsy (rarely). Also, if you feel you need an even more thorough diagnostic work up, see www.maleosteoporosis.org/osteodx.htm for details.  I would personally want to see a specialist in osteoporosis, usually an endocrinologist or rheumatologist, for the initial diagnosis and treatment. Once on adequate therapy, then I would want to be seen by my primary care provider. You’ll have to decide who you feel most comfortable seeing for diagnosis and treatment.  Go to these Web sites to find a medical specialist who diagnoses and treats osteoporosis:  Find an endocrinologist who treats osteoporosis, or Find a rheumatologist who treats osteoporosis.

3. Currently there are several medications approved for osteoporosis treatment. Not all have had clinical studies done to show the drugs are effective in men, but there is no reason to believe they would not be equally as effective for men as for women. One bisphosphonate, Fosamax, has been shown effective in men and is now approved by the FDA for prescription. Additionally, Actonel, another bisphosphonate, and calcitonin are FDA approved for use in women and can be prescribed for men as an off-label prescription. Forteo is approved for daily injections for men and women.  Testosterone is approved for osteoporosis therapy as a result of hypogonadism. Generally, the bisphosphonates appear more effective than calcitonin and are probably the drug of first choice. Calcitonin has analgesic properties and may be the best medication if you have a painful spinal fracture, taken either alone or with a bisphosphonate, at your physician’s discretion. For now, drug therapy appears to be a lifetime undertaking. It is possible that you might eventually only need a maintenance dose of the bisphosphonates and at less frequent intervals, but that has not been fully determined yet.  Please note that calcium and vitamin D supplements are not approved for treatment of osteoporosis, only as an adjunctive therapy to be taken along with some other FDA-approved osteoporosis medication.

4. Fosamax has recently been shown to be as effective when taken in an equivalent dosage once or twice weekly as when taken daily. See Aging (Milano) 2000 Feb;12(1):1-12, Schnitzer T and others. PMID: 20208195. Additionally, Actonel has also been shown to be effective in the 35-mg once-weekly dosing regimen. This is a very convenient way to take the medication as it means only waiting one-half to two hours to eat one or two days per week rather than every day. The clinical tests were done using a one-half hour waiting time before eating. More medication would be absorbed if you wait longer, but no studies have as yet shown significant improvement in BMD when the longer wait is compared to waiting only 30 minutes for Fosamax or Actonel.  There is, however, a recent study that shows users of another of the bisphosphonates, ibandronate, had increased BMD if they waited one hour as opposed to just 30 minutes.  Discuss any of these more convenient dosing options with your physician to see if it would be right for you.  There are now also IV bisphosphonate options, including, ibandronate (Boniva) and zoledronic acid (Zometa). These can be given as infrequently as once yearly, making them a good option for someone unable to comply with more frequent dosing regimens, or with gut problems that make drug absorption difficult.

5. Interpretation of the DXA results is often a problem for men  newly diagnosed with osteoporosis. For an explanation see this Web site. Also, Strong Women, Strong Bones has an excellent presentation on this subject. Basically, BMD is measured against two standards: Either the young normal person at their point of maximal BMD (T-Score), or against a normal standard for people your own age (Z-Score). Osteoporosis is currently diagnosed if your BMD is -2.5 S.D. or greater from that of the normal young person or if you have a fracture due to reduced BMD. There is an approximate loss of 10-12% of BMD for each S.D. below the young normal standard.

EDITOR

Jerome C. Donnelly
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