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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
In 1997 at 34 I started to have symptoms (serious low libido, which affected my marriage, pain and bloating in stomach). Doctor after doctor said things like BPH, depression, irritable bowel sydrome). In 2004 started getting shortness of breath and tingling. By then pain, in abdomen and pelvic area had me sleeping on floor with legs up on a chair) In 2003 I had my first panic attack. Ended up on 1mg klonopin. In 2004 at age 40 a chest x ray detected 2 spinal compression fractures. I had also lost at molar and suddenly had 10 cavities. Dexa scan showed osteopenia. From that my endocrinologist gave me the celiac disease antibody test and i was off the charts. Started the gluten free diet. 2 years later, By 2006, bone loss had stabilized. Pain is gone, but libido is still a memory. latest dexa results show that bone density has dipped below the 2004 reading when i had full blown celiac. Sometimes I think a large tract of villi were permanently destroyed. And sometimes I think my compression fractures messed up my libido. My wife and I are now separated. I take cal-mag-zinc, and a multi, and 2000mg of D. And exercise. I was walking 5 miles every other evening for a year. Got up to 950 miles. Then the bone scan came. So i gave up the walk, and started doing the old joyce vedral women's workout. Weight bearing exercise. Lumbar spine L4 is at -2.5. The internet sez that hypogonadism and osteoporosis go together. I am gonna ask the doctor for some testosterone. Last test a few years ago said 400 but it feels low. Something is not right.
I was diagnosed about 2 months ago (spine was -4.1 and hips -2). My Vit D level was fairly low, my testosterone level was slightly low and I have been taking Prevacid for almost 10 years (which impacts calcium absorption). I have switched to a lower dose Prevacid, taking a Vit D supplement and switched to calcium citrate (which needs less acid). My Dr and I think bisphoshonates are not a good idea, given my long term esophagus issues so I might go on Forteo eventually.
In 2 months, my Dr will re-test my Vit D levels, my testosterone levels and my estrogen levels. She had not tested my estrogen levels previously but I requested and she agreed. She was ready to prescribe testosterone therapy for me but I pointed out that research has shown that there is very little correlation between low testosterone and osteoporosis and that the real relationship (proven by study after study in men) is between low estrogen levels and osteoporosis. Since testosterone gets converted to estrogen in men, low testosterone might contribute to the problem, but if we don't measure my estrogen levels as well, it doesn't make sense to begin a therapy that has significant risks (prostate cancer) without knowing if it might even help.
I exercise regularly, have a low body weight (common for men with osteo), and my mother and aunt both had osteoporosis.
I continued to break bones till my doctor sent me for a bone density test. I scored a -4.7. Shoot I thought that was great. Dumb thought. Since then they have tried most everything on the market but as of yet no change. I have serious issues with my G.I system and most drugs send me to the hospital with lengthy stays. I now live in a protective bubble of sorts with no type of life at all. The doctors give little hope except too end up in a rest home in the near future. Perhaps some day they will test all men but that is unlikely. If i had only known ten years ago life would be very different today.
I am a 52 year old male with scores of -3.9 & -3.7 for spine & hip respectively. My osteoporosis was discovered during my 2nd & 3rd spinal fusion revision surgeries in June 2008. I have 4 screws and 2 rods located at L5/S1. My first spinal fusion in 1999 failed to fuse. I am in constant pain and take 120 - 180mg of oral morphine a day. I am on Forteo which I started 6 months ago. I won't know if my bone density is getting better until 1 year has passed. I now work from home as the docs are afraid that my commute which is 2 hours each way (Long Island to Wall Street) will result in additional fractures.In addition, I have 2 stents in my arteries as I have severe coronary artery disease. I walk every day as I can't exercise due to the pain in my back. I am thankful that I wake up every day to see my wonderful family. Life goes on and so will I.
Hey
I am 51 with scores around -3.1 to -3.4. This initially showed up on a back xray for a routine checkup on arthritis.
I was also tested for low testosterone and I was on the lowest number of normal. I have now been taking testosterone for 2 weeks. I am walking 2 miles a night and lifting weights to go along with the test. I also take the strontium. Will know in December if I am improving.
I have been taking testosterone and Fosamax for over 2 years. My t scores when from osteoporosis to osteopenia over that time frame.
I just stopped Fosamax and any bisphosphonate because of the dead jaw risks. I am looking to try something else possibly strontium. I want to maintain my active life style.
My doctor suggests that my improvement maybe due to my increased free testosterone.
I suggest all males get their free testosterone checked and even if it is low or mid normal to consider adding testosterone.
Please also check your PSA because there "maybe" a link of testosterone with prostate cancer
A few months after starting testosterone I felt like I woke up to the world around me. Testosterone has made a difference.
Stu
I am 52 diagnosed last year with t scores of -3.8 femur and -4 lumbar spine. Fosomax and Boniva made me sick too. I immediately started and have maintained the following physical regime and have had in 14 month a 10% femur and 15% lumbar spine improvement. I walk 3.6 miles minimum per day at a 120-130 step/mile pace (3.8mph), do strength training with free weights, balance and core exercises twice weekly for 45 minutes, and take 4-5 Iyengar Yoga classes per week. It is a lot of time dedicated to therapeutic exercise/movement but the actual improvement is remarkable according to my doctor considering I did it without drugs. Go online and google or search Iyengar yoga in your area. It has worked wonders for me and no drugs!
I am 52 diagnosed last year with t scores of -3.8 femur and -4 lumbar spine. Fosomax and Boniva made me sick too. I immediately started and have maintained the following physical regime and have had in 14 month a 10% femur and 15% lumbar spine improvement. I walk 3.6 miles minimum per day at a 120-130 step/mile pace (3.8mph), do strength training with free weights, balance and core exercises twice weekly for 45 minutes, and take 4-5 Iyengar Yoga classes per week. It is a lot of time dedicated to therapeutic exercise/movement but the actual improvement is remarkable according to my doctor considering I did it without drugs. Go online and google or search Iyengar yoga in your area. It has worked wonders for me and no drugs!
I should also mention that my dad was pretty much housebound after he turned 76..by the time he was 80, I noticed that he was shrinking and very stooped over..his Dr never did any bone scans..this was nearly 20 years ago.
I started taking him calcium pills but never realized he needed more Vit D because he was getting no sunshine at all and the 400 units in his multi Vit/mineral was not enough...Now that I know more, I think I would have recognized osteo in him, he ended up losing about 7 inches in height by the time he was 86 altho' he never had any fractures. [Unless he may have had some spinal fractures that we were not aware of.]
I took Prilosec for about 3-4 years, most of the time..the last 2 years have been on Nexium, 2 40 Mg capsules a day. I also was taking 1200 Mgs of cacium carbonate daily plus whatever was in my foods. My bones got quite a bit worse from 2006 scan to 2008..I now have osteoporosis quite badly. I do think the Prilosec and Nexium contributed to it as I found out a few months ago that Cal carbonate needs stomach acid to absorb it...what stomach acid??? I have Gerd so bad that I had to take stuff to shut down production of stomach acid.
Now I take cal Citrate and extra D but the damage has been done. When I was 60, I had the bones of a 40 year old..now i have the bones of an 80-90 year old!
Dear cliffold
Thanks for sharing your story. Good things have changed for you even tho the DEXA/osteo business is pretty lousy predictor of fracture. The bio meds stay in the bones for 10 years after you stop taking the stuff and changes the basic bone structure from what I have read. Hope it doesn't give you problems down the road.
This website has really given me an education and I have avoided the over popular RX solutions. I've practised good health over the years tho BMD/DEXA would indicate otherwise. But they are such lousy indicators for fracturability, it is unbelievable that they are used at all
Keep truckin'
Dear cliffold
Thanks for sharing your story. Good things have changed for you even tho the DEXA/osteo business is pretty lousy predictor of fracture. The bio meds stay in the bones for 10 years after you stop taking the stuff and changes the basic bone structure from what I have read. Hope it doesn't give you problems down the road.
This website has really given me an education and I have avoided the over popular RX solutions. I've practised good health over the years tho BMD/DEXA would indicate otherwise. But they are such lousy indicators for fracturability, it is unbelievable that they are used at all
Keep truckin'
Dear cliffold
Thanks for sharing your story. Good things have changed for you even tho the DEXA/osteo business is pretty lousy predictor of fracture. The bio meds stay in the bones for 10 years after you stop taking the stuff and changes the basic bone structure from what I have read. Hope it doesn't give you problems down the road.
This website has really given me an education and I have avoided the over popular RX solutions. I've practised good health over the years tho BMD/DEXA would indicate otherwise. But they are such lousy indicators for fracturability, it is unbelievable that they are used at all
Keep truckin'
Am a male diagnsed with OP 6 years ago at age 50. My wife had suggested the "heel test" as I had a couple of risk factors, mainly being light build and a heavy lifetime smoker. DEXA scores were right around -2.5 & indicating I had the bones of an 80 year old so was immediately prescribed Fosamax weekly
Had always had an active outdoor life and good diet and had never fractured so was surprised by the findings.
The next 2-3 years the BMD increased around 10% lifting me to the osteopenic zone. I also quit smoking & took up running about 4 years ago and stopped Fosamax. Within 3 months got a stress fracture in my heel (calcaneus) Doctor said it was due to the osteopenia & to get back on Fosamax (which I did) and run just a little (which I ignored). As I regained some lung function ended up 6 months later with a stress facture in the hip (femoral neck) and was advised by a sports doctor to keep runs short. Was sent to an endocrinologist but nothing significant reported.
Had plenty of downtime to read & research the condition and amazed to find that hip stress fractures are common in new runners male & female. The US military has a report on the incidence in new recruits
Started a running program that simply involved keeping increases in time/distance/intensity to less than 5% per week and taking it easy every 4th week. It's now been 2 years since a fracture & I ran over 2,000km last year including a couple of mountain marathons. Am still on Fosamax. My T scores have not significantly changed in the past 4 years (3 tests), looks like its plateaud.
So in hindsight a couple of observations. Weight bearing exercise with proper build up has substantially increased the strength of my bones to resist stress fractures even thought the BMD has not changed. There is no doubt whatsoever that my 2 stressies were caused by too much too soon
I will stop Fosamax this month after 7 years of treatment. I have to wonder whether I should ever have been prescribed it in the first place. Maybe it would have been smarter to have 2 DEXA to determine if the BMD was in decline or if it was simply low in the first place
Many of the fracture studies use older female populations whose fractures seem to come from falls. These are the studies used to justify why anyone with a low T score should take drugs to reduce their fracture risk. My guess is that for people like me who had never broken a bone that a low reading should be used as a base measurement for future comparison and as an indicator that lifestyle should be reviewed for risk factors. With what I know now I would not necessarily recommend Fosamax (or similar) as a first treatment
The irony for me is that the Sunday morning routine of taking the pill, keeping upright for an hour before eating etc led me to walking the dog, then jogging then quitting smoking & becoming a runner. I may never have made those lifestyle changes without that drug!
Bob,
That's pretty good. My T-scores were -4.2 in spine and -3.9 in hip. Have been on Fosamax for a year now. Did you tell the radiologist you were taking strontium? They are supposed to use a correction formula when strontium is being taken. I guess strontium makes the BMD look better to the DXA machine. Oh yeah, I'm down by 2-1/2" from original height. Trying to correct my slouchy posture, but it's not easy. Good luck.
Tom
Tom, I have waited until I received my latest T-Scores. No problems in my spine but -2.4 femur neck. No fractures and I have lost an inch and a half in height. Celiac Disease is not number one cause of osteoporosis in men and being undiagnosed for such a long period of time I have been recovering for about ten months and able to absorb calcium etc. I take everything reported to build bones, including strontium. The above T-score is a slight improvement after taking Fosamax for four years. Bob
Hi Bob,
As a fellow Celiac and fellow male, I'm wondering if you would like to share your T-scores? Also, have you had a significant height loss? Any fractures yet? I see you've got four years on me, so you might also have more experience with OP.
Amazing that you got to see Doc Fasano in person! He's quite famous in Celiac circles. Sounds like a really nice guy too. BTW, did you have DH also? I had it for 40 yrs without ever learning of the gluten link.
Tom
The number cause of osteoporosis in men according to the doctor that saved my life, Alessio Fansano of the Celica Center, U. of MD, is Celiac Disease which is an autoimmune disease where one's body attacks and destroys the small instestines, hence one is unable to absorb the necessary nutrients such as calcium and iron. Anemia is common in Celiac. My treatment is simple a gluten-free diet, no wheat, rye or barley.
Is mountain biking considered weight-bearing exercise? I thought biking was not, but maybe that's street riding, not the rough and tumble-through the mud riding.
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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