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Would any of the men in the community share about their lives with osteopenia/osteoporosis? All I know about men having this disease is from very few articles that include men Usually the information is very brief. I think many of the women in the community would be interested to know how this disease affects your lives; how you found out you had the disease. Thanks.
Exercise Celiac disease Surgery Scoliosis Falls Back pain Prevacid Kidney stones Stress Evista Boniva Forteo Fractures Prostate cancer Fever Physical therapy Anemia Actonel Lupron Weakness Cancer Klonopin Nexium Morphine Osteopenia Osteoporosis Osteoarthritis Cortisol Arthritis GERD Fosamax Pain Spinal fusion Memory Depression Prilosec Stress fractures
I was diagnosed with osteoporosis in 1994 while I was still on active duty in the military at age 50. I had back pain for several years without a definite diagnosis. In retrospect several of my X-rays were very suggestive of low bone mineral density (BMD), but that had been missed. In that era it was often thought that men didn't get osteoporosis anyway. Finally I was referred to a major medical center after I had complained of severe back pain. There the orthopedist walked into the examine room with my X-rays on the lighted wall maybe 15-20 feet from him. He said something like, "Where did you bone mineral go?" He spotted that I had a couple of spinal compression fractures and he immediately referred me to endocrinology where it was also found I was hypothyroid along with having osteoporosis. (What fun to enjoy life again once my thyroid hormone levels were back to normal).
I was started on testosterone with self-injections with a 22-gauge needle once a week. That was fun. In 1996 Fosamax was approved for treatment of women with osteoporosis, and thus as an off-label treatment for men. I immediately went to my endocrinologist and asked to be started on 10-mg/day Fosamax, which she agreed to do. Along with that I took calcium and vitamin D supplements, and have later added 400-500-mg/day magnesium tablets. I switched to 70-mg/week Fosamax as soon as that was approved and continued that until my BMD returned to the near normal range about three years ago. At that time my endocrinologist switched me to 35-mg/day Fosamax as a maintenance dose which I have been on since. My first DXA (bone density test) was still normal about a year after being on the 35-mg Fosamax. I will have a 2-year follow up DXA done next month and hope to report on that when I see the results in December 2007.
My back pain, which was probably caused by both osteoarthritis and osteoporosis, forced me to retire fully when I was able to retire from the military. It also made for a lot of very long and painful work days while I was working. My wife and children became physical therapists each night when I'd come home as they tried everything imaginable to give me some relief. It could have been a lot worse if not for my living in an era where there is now approved medical treatment for osteoporosis.
Because there was so little information about male osteoporosis, I started writing a newsletter for men in the Linking Up group from NOF. I mailed that to interested men before the Internet was going full bore. Once I discovered the power of the Net, I switched over to a Website which I'm still doing today at http://www.maleosteoporosis.org. I try to keep up with the more important research and other osteoporosis-related information on that site in the hopes that others will find helpful information there and to educate myself in the process. Although it is mainly directed to men, I'm sure there is a lot of generic osteoporosis information on the site that will benefit women too.
The one thing that I most suggest for people who find themselves with osteoporosis--or any other medical problem for that matter--is to educate yourself about your disease. No one will ever be more interested in your health than you are. Find a good medical provider, but don't trust blindly in him/her for all your medical care. Become an expert yourself so you can know you are getting the best care possible. The Internet makes that possible today in a way that would have been unthinkable even 10-15 years ago.
Thanks for responding. Your post may encourage other men to share. I was in small group of women that came together from the Linking II list. Note the B posts. We were at the point of inviting Linking I and eventually we would have considered adding men to our group. But the notice of this community came, and most of the B's have transitioned as we have closed our group. I'm one of the moderators of the community. I know that the B's will be very interested in reading your post. I was also diagnosed with osteoporosis at age 50. My friend had researched hrt and bone loss which she brought to my attention. I requested a dexa with my physical; not expecting to find that I had bone loss in the -3 range both hips and spine. My doctor at the time suggested I take some time which I found to mean make my own way through the maze of information on meds, calcium; minerals, vitamins, nutrition, and exercise. Fortunately, I was and remain fracture free with improved test scores. My next dexa will be 2008. You are right. We need to be assertive and advocate for our health. Sometimes, as much as we feel we know about this disease, we may find ourselves revisiting some of our choices; as I am at the moment. I would have told you that my nutrition was very healthy. No meat, lots of veggies; dark leafy and colorful, edamane, and soy flakes; only to recently find out that soy, bok choy, kale, and certain other veggies may have a negative effect on the thyroid. Apparently, many women over the age of 60 may have some problem with thyroid. Hopefully, if it is borderline, where meds are not yet needed or would help, a change of diet, lowering stress and other lifestyle changes may help. I think we want to try our best to avoid the domino effect of one health situation creating another health situation. I checked out your site. I hope you will spend time here also. I found your post interesting and informative as I have very little knowledge of what men deal with having this disease.
I was diagnosed with Osteoporosis last month. At that time, I had sought the second opinion of a Rheumatologist regarding a low back pain that I had suffered from for the last 18 months. He reviewed my most recent X-rays, CT Scans, and MRI with a radiologist. A lumbar spine compression fracture at L2 that appears to be old and a suggestion of anterior wedging at T12 along with diffuse bony demineralization were found in a very recent X-ray. The lumbar spine compression fracture had been previously found on the imaging studies done in late 2006.
The Rheumatologist recommenced that I have a DEXA scan and receive a number of lab tests. The lab work included CBC With Differential/Platelet, Comprehensive Metabolic Panel, FSH and LH, Testosterone/Serum, Vitamin D/25-Hydroxy, Phosphorus/Serum, Thyroxine, PTH/Intact, Serum Protein Electrophoresis, and Random Urine Protein Electrophoresis.
The DEXA Scan showed a Spine T-SCORE -2.1, Femoral Neck T-SCORE -2.5, and
Total Hip T-Score -1.8. The lab results are within normal reference intervals and do not indicate a malignancy. With the exception of the pain in my lower back, I am feeling very well, suffer no
headaches, no lost weight, no fatigue, no night sweats, and am very active. I do have a family
history of Osteoporosis and had once been a smoker.
My Family Physician has prescribed a once weekly Vitamin D 1.25 MG (4 weeks only) and Actonel 35 MG Tablet. He has decided that my Osteoporosis is likely familial. The Rheumatologist recommended that I seek the opinion of an Endocrinologist. It seems to me
that most of the likely secondary causes have been looked at and dismissed as possibilities.
I’m considering not seeing an Endocrinologist at this time, taking the medication I have been prescribed, and repeating my DEXA SCAN in one year. If there is a decline in BMD, I will re-evaluate my situation with my family physician.
I must confess that I am very upset, anxious, and depressed about this disease. I am 55 years
old and still have dependent children.
I am a 73 year old white male and found I had an osteo problem when I went with my wife to an
osteo heel screening October 2007. I, too, thought this was a female disease and had found no reason for concern earlier. Have 3 sisters and mother who have or had the condition. Had a DEXA scan with T scores: Lumbar -3.4 Femoral Neck -2.7 Forearm -4.3. After going thru the blood tests and urine tests it was found that I had high calcium in 24 hour urine test -hypercalciuria-unknown cause since PTH, testostorone, blood calcium are all in range.
Treated with chlorodane for 30 days. Retested OK but am still taking it and not sure for how long.
I have hiked, biked, and worked out most of my adult life. Low salt, no smoking, no bad BMD
drugs and was quite taken aback to be diagnosed with this "women's disease". I am still working with my Endocronologist as to what I want to do. I have had broken bones in my past history- 2 shoulders from downhill skiing, ribs from mountain biking, scapula from trail biking(motorcycle), but they seemed reasonable at the time considering the speed of impact.
I've researched and read all that can be found on the web and after reading the book "Myth of Osteoporosis" , I'm thinking we have been sold a "BIll of Goods" by the drug industry. The basic points are that DEXA scans measure bone density and bone density does not measure fracturability. That is an airplane wing has low density but that doesn't tell the strength of the wing. The drug ads tell us that 50% of the people die within a year because of hip fractures. What they don't tell you is the health and overall fraility of the people getting these hip fractures. There are a number of other interesting points about how to "lie with statistics". It needs to be read.
I expect to have a discussion with my Endo next week about the information in the book as he tells me there are some parts aren't correct.
As for drugs, the effects seem worse than the risk of fracture-hip being my major concern. I too have had back pain in the area between the scapula and spine-in the same area as the broken scapula. I have poor posture and that has contributed to the pain, Lower back pain seems the norm for many men. I have been doing Yoga for 5 years mainly to try and relieve the scapula pain. It didn't help that pain but took care of the lower back pain and is the best age rejuviating thing I've done. The scapula pain has subsided since I had shoulder surgery last year and worked with bands to rehab the shoulder. I've continued to work out with them and now the shoulder muscles have built up and the scapula pain is going away.
So on to the Osteo" Bogey Man".
Hi! I am a 53 yr-old malediagnosed with Osteoporosis this month (March 2008)!!! I have had multiple MD opinions and am currently being seen by an Endocrinologist (after consulting with Internists and Orthopaedists). My spine is supposedly like that of a 80-yr old, has scoliosis, and has evolved to this worse stage over a 5 to 10 yr period due to endocrinal disorders in the pituitary, thyroid and parathyroid which went undiagnosed though there were some signs and symptoms (mainly back and neck pain, weakness and no muscle tone) over the past decade. I am waiting for the results of my bloodwork.
I am on once-a-month Boniva and daily 500 + D Oscal now. Have been asked to do weight bearing exercises and continue physical therapy.
Hi Men with Osteoporsis &/or families who know of other men with osteoporosis !!!
I found out that my Vitamin D levels are also very low and have been advised once a week of ERGOCALCIFEROL. Any insights into this and my condition from my earlier post?
Please share your insights. Thank you.
Hello, please check under members for Jerryd3001. Place Jerryd3001 in Search. Please send Jerryd3001 a message. I'm sure you will receive a reply that will be very helpful.
Hi,
I had been on Evista for a little over a year now for osteo. I have not talked to any other men who are taking evista, so I was wondering if your doctor had thought of this drug form treatment, but had ruled it out for some reason..
I am trying to find other men who have information on Evista. My arthritis doctor prescribed the Evista but my family doctor says he is not comfortable with me taking the drug. therefore I am trying to get more information.
I am a 56 year old male recently diagnosed with Osteoporosis 2 years ago. I was given all kinds of tests, bloodwork, bone desity, full bone scan to diagnose Mylenoma, etc. and no root cause was found. Initially, it was Osteopenia but the condition got worse in my hip last year as I lost 6% of my bone mass there.
Most recent scores from last year are as follows:
Spine
Region T-Score Z-Score
L1- L2 -2.8 -2.9
L1-L4 -2.4 -2.5
L1-L4 -2.3 -2.4
Left femur
Neck -2.4 -1.8
Total -1.6 -1.4
Unfortunately, I can not take Fosomax. It makes me "Sick as a Dog" Within 3 - 4 days of taking the drug, I was throwing up and actually had a fever, flu like symtoms. My original doctor inticated it was a rare reaction happening in only 1 % of the cases. I now have another Dr and am on 1200 MG calcium plus vitamin D per day and lift weights, ride a bike and walk regularly. I used to only take 600 MG of calcium. I have also taken myself off of Prilosec which I suspect may have been the cause. Now taking GINGER tablets and it helps a lot with reflux. The Dr's just can not pin point any cause and the latest Dr has sugested that I go to a clinic near my home town of Austin, TX which is in San Antonio.
The big issue for me is that I can not take any drugs and my Dr is not ready yet to give me injections. I was told that my back has stabalized and no bone loss was indicated last yr so at least that was good news. I discovered I had the disease after enduring a compression fracture of my L1 vertebrea 2 yrs ago as a result of trying to lift a heavy object.
I'm a bit frustrated at times because I know it is a matter of time before more bones start breaking especially in my hip.The Dr says I have some time to figure it all out but it is really frustrating because Im really not able to take the drugs that could help this stuff. I just keep hoping the next bone scan will reveal more positive results. I have not had one this year and so far I'm hopefull the weight lifting I'm doing has at least stabalized things. I'm bit reluctant to get another DEXA scan until next year. Maybe I just don't want to know.
Anyone out there with similar issues?
Thanks
Don
I am a 45 year old male and for the past 3 years I kept failing the heal scans at work when we would have health fairs in our office. I just assumed their equipment was faulty, or they were just using this as a way to get me in for an office visit to sell me on something like a drug.
This year while having a regular check-up at the Dr.'s office he said that isn't normal and I failed the heal scan there as well. He ordered a DexaScan but before I had that done I ran a 5k race with my son. I just jogged the race and even walked part of it, but after a few hours after the race my knees began to hurt and over the next several days the pain became unbearable. Long story short, I had fractured both knees while jogging.
I have since been on Forteo for about 2 months. No major side effects, however I am losing weight, to the tune of about 10 lbs. I am monitoring that closely, and I hope that it is not related to the medicine. I'll keep updating so others might share their experiences/sideeffects as well.
Pete
Hi Don,
I understand your frustration. I'm also a 56 years old man and was diagnosed with Osteoporosis last year. My T-scores are very similar to yours. It was discovered by a Rheumatologist who was investigating back pain I was having. Particularly frustrating is the fact that subsequent blood tests failed to reveal a reason for my Osteoporosis. Testing did reveal I had a slight fracture in one of my vertebrae. Unlike yourself, I have been taking Actonel without any major side affects. I'll be receiving another DEXA in October and am hopeful that the results will be better.
Since you aren't currently taking medications, I think that monitoring your condition is especially important. Has your doctor considered putting you on Forteo? You might consider checking out the information posted at the Male Osteoporosis Support Group website. The address is http://www.maleosteoporosis.org.
I had always believed that this was exclusively a problem that women have. Over the last year I have come to realize that a significant (20% - 25%) of people with Osteoporisis are males. Unfortunedtly, it is often overlooked and untreated in men.
Good Luck!
Bill
RMA - I've read from a reputable source that ERGOCALCIFEROL is not a good form of Vit D and that we should use Cholecalciferol instead. You may want to do some research on that.
I was diagnosed with prostate cancer a year ago and required long-term hormone deprivation therapy (lupron). I am 57, a serious athlete who has run 9 marathons and now bikes and rows, so I was amazed to learn i had marginal osteoprosis in my hips (-2.3). As lengthy use of lupron can thin bone by 5-10%, treatment was required and I opted for an annual zometa infusion, given zometa is also used for metasticised PrCa (mine is locally advanced). When I reflected, I recalled my Dad (GRHS) shrunk significantly in his latter years. While he was only 69 when he passed, he had shrunk from over 6' to a good bit less than my height of 5'10"; also my sis has osteopoenia. In a way, the PrCa has been a blessing in that I learnt early enough of my own Ost. and will continue to monitor & receive treatment.
rick
PS .... my Vit D - hydroxy 25 was also seriously low at around 25, albeit I was tested mid-winter. I am outdoors a lot, so again this was a surprise. I now take a supplement and am back up to 45; Vit D is also a key anti-oxidant to fight PrCa. I have excessive Ca. on my blood and have suffered from kidney stones and other ca. deposits for years - ca. was observed in my prostate, so I use Vit D alone.
Hi Don, I'm 56 female and a runner for almost 30 years. I thought osteoporosis was something I wouldn't have to deal with until 2 years ago. I was on first Prilosec and then Prevacid for over 10 years. Your post is the first time I've seen it mentioned on this site. I suspect that's what caused my osteo as I have always been physically active and eaten a healthy diet. Anyone else out there been on long term Prilosec or Prevacid and been diagnosed?
I am 44. In the spring I had an x-ray of my foot because my wife thought I might have broken my toe. The x-ray showed bone thinning was present. My Dr recommended that I have an ultrasonic heel scan, which showed osteopenia. The technician talked with me about diet and exercise and I modified my diet to take more Ca, because I was under 1g. Based on the heel scan result, the doc recommended a series of blood tests and a DEXA hip and spinal scan. They did not check my legs or feet. The DEXA showed spinal osteoporosis but normal hip bone mineral density. The blood tests were all normal, including testosterone, Vit D, Ca, etc.
After the DEXA, I was referred to a rheumatologist to discuss the results. He talked with me about diet and exercise as well. He and the heel scan tech thought I was getting a reasonable amount of exercise, though could go with more weight-bearing and impact work. The rheumatologist also thought I might not have reached the maximum possible BMD in my youth, so time has caught up with me, but nothing is for certain and the cause is not clear. He ordered a little more blood work and 24-h urine collection. Cortisol was a little elevated, but otherwise nothing has shown up. I have a follow-up appointment with him to discuss those results next month.
I have used nasal (occasionally oral) corticosteroids for most of my adult life for sinus problems. The nasal versions are not supposed to be absorbed systemically, so the rheumatologist doubts that is the issue, but my ear nose and throat doc agreed that I should stop just in case.
Since then I have read more about osteoporosis and how to approach it. One thing that I didn't mention (yet) to the rheumatologist was my (mild) pectus excavatum, sunken chest. Apparently, those are associated with (a risk factor for) osteo, but I didn't know that. I am also slim, which is another factor.
I have also modified my exercise to include more weight-bearing and impact exercises, but I'm still trying to figure out what is the "best" thing to be doing for that. At my age, apparently, BMD will no longer increase, so anything I do will just be maintenance.
Brad,
At your youthful age of 44, I'm thinking you should be able to increase bone density. I'd be careful about impact exercise, if there might be some risk of fractures. Of course I'm no expert but have been perusing this forum for awhile now. There seems to be a lot of good information here.
Tom
Sandy,
I'm a 67 year old caucasian male (well 1/8 Cherokee too). I was dx'ed a year ago by dexa scan. My spine T-Score was -4.2 and hip was -3.9. My GP phoned me and said I had severe osteoporosis and he was prescribing Fosamax 70 mg/week and I was to take 1500 mg/day of calcium.
I was diagnosed at 60 with Celiac Disease and follow the gluten-free diet religiously. I'm as much to blame as my doc for not tripping to osteo sooner. The gals on Delphi Celiac Support Group had also mentioned the inherent risk of OP, but I was too dense to seriously consider myself at risk. Luckily the nurse noticed I had lost another 1-1/2" of height beyond the first inch considered normal with aging. Then the light in my head finally flickered on.
Of course I've learned much more re OP in this forum, for which I am grateful. I'm now taking magnesium, vit-D, and have added strontium citrate about a month ago. Also have started walking and joined a health club to get access to treadmills. Now getting good books to read, including exercise books.
Have minimized the steroids I take for cat allergy. I got an appt Dec 3 2008 to see a rheumatologist. Couldn't get in to see an endocrinologist without a major drive. I plan to go in prepared with my Dexa report, and that radiologist recommended that I be re-tested in a year. I hope that means the insurance will have to cover it.
Tom
Tom
I talked with my rheumatologist on Monday and asked him about exercise, specifically if I could expect gains in BMD with exercise. He said that at my age, BMD will no longer increase significantly. My efforts may be able to hold steady at where am I now. That was depressing even though it confirmed what I suspected, based on what I had learned already. I wanted to think I could still make some improvement. Reality sets in.
UK based 59 year old male diagnosed with osteoporosis just over a month ago.
Damaged a tendon rock-climbing which wouldn't heal which lead to an X-ray which showed bone thinning and hence a DEXA scan. My hips etc aren't to bad the worst score being -2.00 but the scores in my spine came as a bit of a shock. Average -3.9 but a couple of lower Lumbar are at -4.3
Like many here have always been fit : rock-climbing, mountaineering and off-rode mountain biking.
Once I had the nbad news went into a bit of a depression and did nothing for a week or so then one sunny morning got up and dragged the mountain-bike out of the garage and went and did some quite technical trails over the local hills.
Just can't give it up: too much fun plus the thought of coming off and shattering into a thousand pieces increases the adrenalin rush somewhat!
If I'm going to break bone I may as well do it with style!
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