Has anyone had an experience of not h... - Osteoporosis Support

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Has anyone had an experience of not having bone fractures while having osteoporosis?

Bella33355 profile image
20 Replies

Hi everyone, my question is whether any of you have had the luck of not having bone fractures with osteoporosis. Is it possible at all? And if yes what is the secret?

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Bella33355 profile image
Bella33355
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20 Replies
Bones4Me profile image
Bones4Me

It wasn’t until I suffered a fracture, that I found out I have Osteoporosis. As a result, during these last three years I have (unfortunately) suffered nine spinal fractures. Started on Prolia shots right after I found out that I had OP. Since I am still fracturing, my Endocrinologist is switching me to Evenity in December.

Met00 profile image
Met00

Osteoporosis is diagnosed on the basis of low bone density, which isn't the same as bone strength. For that reason some people fracture with osteopenia or even normal bone density, while others with very poor bone density never fracture. I was diagnosed 9 years ago and so far haven't had a fragility fracture. You should have a FRAX (fracture risk) score, which is an estimate of fracture risk, but can't actually tell you whether or not you'll fracture. For example, if your risk is 10%, that means 10 in 100 people with the same risk will fracture, but 90 won't, so on the balance of probability you'd be very unlikely to fracture. Even if you had a 30% risk of fracture, that would still be a 70% likelihood of not fracturing! So it's definitely possible to have osteoporosis and never fracture. The most important thing is to keep your bones strong with healthy diet and lots of exercise.

pigeonCl-HU profile image
pigeonCl-HU in reply to Met00

Healthy diet AND exercise; you said it, and in my experience this is the best recipe. Walking is an excellent exercise for OP. Balance exercises will hopefully avoid a fall in the first place🙂

MyCheesecake profile image
MyCheesecake in reply to Met00

Really, I didn't know there were as another fracture test. I guess you have to ask your Dr to get another test, then there's if Medicare will pay for it. My mom was 90 when she died, had always been overweight & had arthritis & both knees replaced but never had osteoporosis. She got dentures in her early 20s when she moved to Grand Rapids from Iowa. They never had $$ to go to the dentist & there wasn't any Medicaid for kids to get dental work done. But she has those same dentures all of her adult life, & they still fit at the end. Same with my Grandma. But I thought even without having osteoporosis or any bone loss, when you get teeth pulled eventually the jaw bone shrinks without teeth & the gums recedes. But evidently not for my mom. Tho my dad had bone loss &the hump& did fractured his spine bending behind something, that quick. But I don't remember him getting tested or hearing that he had osteoporosis. But I too would like to know if there's anyone who's had severe osteoporosis & have not had any fractures. I did fracture a rib in 12/22 from falling off a chair I was standing on to change a light bulb,so could've happened to anyone,but it was before I had a DEXA scan & was diagnosed in March of 2023. Now my PCP wants me to get the IV Reclast fusion, even though I told him I didn't see the point. I've had a chronic progressive degenerative debilitating uncureable illness for 12 years+ am in end stage & part of the illness caused exocrine insufficiency which causes malabsorption of nutrients especially fat digested vitamins aka, A&D. So I took liquid D& ended up with D toxicity & that caused my calcium to float in my blood &caused calcium deposits in my arteries but didn't go to my bones. In fact high D & no K2 is the reason I'm here. Boy I'm not going to have that Reclast, not on top of needing a neuro procedure, have no dentures that fit& am done with anything but dealing with absolutely necessary medical care. Too much for too long.

Met00 profile image
Met00 in reply to MyCheesecake

FRAX shouldn't cost anything, but it's a calculation you can do yourself if you want to. Here's the link: frax.shef.ac.uk/frax/. Click on calculation tool at the top and select your country from the drop-down box. This takes you to a form that you then complete. You need your neck of femur bone mineral density or t-score to get a more reliable result. It only tells you, however, how many people in 100 would fracture with the same risk factors as you - that gives you a percentage risk factor, but still doesn't tell you whether you will fracture or not.

Raleigh59 profile image
Raleigh59

Hi I’ve not had a fragility fracture.

I think the secret is sublingual 5000 vit D3 per day and keep moving all day long

Kitchenbuddy profile image
Kitchenbuddy

I was very frightened when I was told that I had severe osteoporosis. I am an Occupational therapist assistant with a BS in community health diet and nutrition. I immediately made an appointment with my primary doctor who wanted to start prolio injections. From my experience working in geriatric rehab I treated seniors with fractures who were taking calcium phosphate or the injections to improve bone density. Its my own personal experience and concern for possible side effects that I choose not to take it. Each person must make this decisions.. The medicine may help others as we all react differently. That's what is so confusing not all medicine works the same for all. Its unpredictable in my opinion. My digestive specialist tells me to get my nutrition from food. I am a therapist so I highly recommend exercise. Walking and yes keep moving its the best thing a person can do. If you can't walk sit on a chair and do exercises with exercise bands and light weights. Always consult your doctor and maybe get a license therapist to show you the correct way to exercise to avoid injury. Do your research before taking medication and trying an exercise program to do what is best for yourself. I have been diagnosed about 6 years ago. I had shoulder surgery and my surgeon says my bone health is very good 2 years ago so this makes me feel better. Not taking any bone medication and have had no fractures so far. Be your own Advocate. Reaching out to others help you gather information and decide. Best Wishes.

corw314 profile image
corw314 in reply to Kitchenbuddy

Thankyou for your post. I feel the same about meds. I have had my gp and my endocrinologist say I need to start meds but I am not comfortable with this yet. Have had no fractures, keeping fingers crossed but have added calcium and d3 and looking for a phys ical therapist to learn the correct way for strength training. I was diagnosed 2 months ago total dex 1.9 with my lower spine 2.9. This is quite the journey especially educating and learning what my options are.

Kitchenbuddy profile image
Kitchenbuddy in reply to corw314

Stay informed. Best wishes. 🙏

GardenerJH profile image
GardenerJH

Ever had a bone fracture

dcdream profile image
dcdream

I have had osteoporosis for 10 years, no meds, no fractures to date. I am nearing the severe level of said disease. I eat healthy, walk 6 days per week for 45 minutes, do yoga 2x per week, pilates 2 x per week, weights 2-3 x per week. I have created a fall free living space and much of my work out routines help maintain and promote good balance and posture. I also try to keep my anxiety under control with meditation and sleep.

yogalibrarian profile image
yogalibrarian

Bone density is only one factor in fracture risk. People at all bone densities can -- and do -- fracture.

American Bone Health's Fracture Risk Calculator will walk you thru the factors.

You could rely on luck not to fracture. But I don't recommend that.

Instead, once you know your risk (from the calculator), download Steps to Take When You Know Your Fracture Risk.

americanbonehealth.org/wp-c...

Create a plan that includes healthy diet and exercise and necessary lifestyle modifications (and adhere to the plan). If your risk is high, those alone will not be enough. Take an osteoporosis medication if your healthcare provider prescribes it.

josephinius1 profile image
josephinius1

I've read that 85% of people diagnosed with osteoporosis will never fracture. Those are pretty decent odds, seems like. But it also seems like, based on my own experience, diagnosed 9 months ago at age 61, compelled by my husband, not doctors to get a DEXA because my back pain was becoming chronic and I didn't know why, that if you're in the 15% that will fracture, there's little you can do to stop it. In my case, activity is the problem. By all rights, I should have great bones; I've been active all my life, did strength training, functional mobility classes, became a distance runner in my late 40s, have always had bigger bones, lots of muscle, a significant amount of fat, never smoked, drink very little. Yet I apparently had already had several fractures by the time I got the DEXA and have had even more this year, and every one of them is associated with my efforts to stay active. So, it's quite a conundrum, especially if you're the kind who just feels better with strenuous activity, and the rest of your physiology is aching to DO it.

I don't know why MY bones aren't stronger. But weirdly, my husband has fractured two vertebrae too, (attempting to water ski--that's how osteoporosis got on our radar, HE researched it. His spine was at -2.9, pretty bad for a 60 year old male body builder. (Mine is -4.6, for reference. Please God don't let it be worse now.)

All to say, I DO think what you do makes a difference. If you're not doing heavy labor, don't go to exercise classes that literally throw curve balls, etc. you'll probably be fine.

DiscoLover profile image
DiscoLover in reply to josephinius1

I just read your post and I have been doing a lot of research myself on osteoporosis. I was diagnosed with Osteopenia when I was 50 and by the time I was 53 it had advanced to Osteoporosis. I am now 56 and have been resisting my Primary Care Physician and Rheumatologist’s insistence every year that I go on an osteoporosis medication. I have never had a bone fracture which seemed to shock both my doctors. My T-Score for my spine is -3.5. I am getting a Dexa Scan next week and I am hoping for improvement or at least no worsening of the condition. I have been taking extra calcium and Vitamin D3 for many years and I exercise regularly, although I do more cardio than weight-training and need to incorporate more weight-training into my routine but I need to do more research on what weight machines are safe for me to do with severe osteoporosis. I don’t want to cause a fracture by choosing to use the wrong weight machines. I am going to start taking Vitamin K2 (MK-7) supplements soon (trying to pick the best supplement) as I read that, along with Vitamin D3, this vitamin helps calcium get into your bones. I also am starting to take my calcium supplements at different times of the day because I read that the body can only absorb 500 MG of calcium at any one time so taking more than 500 MG at a time does no good. I’m also starting to take my supplements with meals. I use to take all my supplements first thing in the morning on a empty stomach but I read that calcium needs fat to be absorbed properly. The things I have found by doing my own research are things my doctors should have been telling me but they only seem to care about getting me on a drug instead of trying to help me improve my osteoporosis using natural methods. You said your T-Score was -4.6. That is very high and I thought my score was high. You said you had several fractures without knowing it. Didn’t they hurt? You said you have had several other fractures this year. Are they all healing well? One of the reasons I don’t want to go on a osteoporosis drug is because I have read that once you are on those drugs, it will take 3 times as long for a fracture to heal. What is your experience with the healing? After reading that you think your fractures a due to your exercising activity, I will be doing more research on safe exercising for people with severe osteoporosis. The last thing I want is to cause myself to have a fracture while trying to prevent a fracture. By the way, my FRAX score if I did it correctly says I have a 19% chance of having a fracture in the next 10 years. Not great odds but certainly not the worst odds either. If you wouldn’t mind posting what your next DEXA score is. I will post mine once I get the results. Thanks.

DiscoLover profile image
DiscoLover

Hello, I am a 56 year old woman. I have had severe osteoporosis for the last 3 years (diagnosed with Femoral T-Score of -3.1 by Dexa Scan in 2021). My Femoral T-Score on my Dexa Scan in 2022 was better at -2.7. I am getting another Dexa Scan in a few weeks and I hope I continue to see improvement. I have not had any bone fractures since being diagnosed with osteoporosis which my doctor acts very shocked about every time I see him. Maybe I am just lucky. I don't have any other risk factors other than being very short (5 ft. 3 inches) and low weight at 112 pounds so maybe that is why I have not have a fracture yet. I try to eat healthy, take calcium and Vitamin D3 supplements and get regular exercise. I am retiring in less than 5 months and moving to Florida. I hope once I am retired and living in Florida I can do an even better job of eating healthy and exercising. My biggest fear is that I will fracture my hip or spine and either be in pain the rest of my life or in a wheelchair. That is not how I pictured spending my retirement. My Primary Care Physician and Rheumatologist have both pressured me for years to go on an osteoporosis medication but I have been refusing. I spend a great deal of time doing my own research and all of the osteoporosis drugs on the market have such horrible side effects and review from people who have been or are currently on them that I am way too scared to try them. If I do end up getting a fracture eventually, I may decide to risk the drugs but not for now. I hope you continue to have no fractures.

Maria1360 profile image
Maria1360

Knock on...something, but I have not had a broken bone so far, diagnosis upgraded to Osteoporosis in 2021 and not addressed by my doctor until 6 months ago when I asked about it!!! I also have Meniere's Disease with Drop Attacks, so I have fallen quite a bit.

I am going to be unhelpful here by saying I literally have no idea how I've survived without a broken bone. but I still take calcium and Vit D, because I have Malabsorption Syndrome from Gastric Bypass Sx 23 years ago, the D because my levels are low when my anemia, requiring IV Iron treatments, cycles around every 2-3 years, and calcium out of habit, I guess.

After doing a great deal of research, I decided on Tymlos. It seems to me to be the safest, most effective at building bone, with the least side effects. The downside is it's a daily injection for 18 months to 2 years.

My doctor's PA ordered Prolia, clearly without addressing any of my glaring comorbidities that would preclude me from taking it, and I refused to take it. I did the research and chose Tymlos. If I wasn't an RN, and as a matter of course, research new medications I'm not familiar with, I honestly don't know what would have happened to me.

Oh, and I cannot take any of the oral meds because I also have Barrett's Esophagus, and it would get ugly.

As far as cost, I have it covered with a $3 a month co-pay. It gets delivered to my house via Walgreen's Alliance Specialty Pharmacy.

Typically, if you reach out directly to the pharmaceutical company, they can give you discounted rates or coupons for significant amounts off per month, look for info on their website.

I found this pretty quickly: "While 88% of insurance plans cover the most common version of Tymlos at a co-pay of $32.50-$82.50, many of them have restrictions. Manufacturer and pharmacy coupons can help offset the cost."

Your doctor's office staff should be able to help put you in touch with the right person as well through their Radius Pharmaceutical rep.

Hope this helps!

99real profile image
99real

My worst vertebra is -3.8, with the others slightly better, still osteoporosis. Doctors have told me to take medications, which at this point I am not doing because in my case I am convinced that taking highly recommended proton pump inhibitor medication caused the osteoporosis in the first place, making me gun shy. the first year after I was diagnosed I fell three times, with no fractures. I think there is a lot more research needed to determine real fracture risk, with DEXA scores being one factor. I am not recommending that anyone else not take medicine; as has been noted before, some people fracture with decent DEXA scores, while others with poorer scores don't. Have you been tested to determine why you have osteoporosis, for instance, a malfunctioning parathyroid? I read Dr. Keith McCormack's book on osteoporosis, and learned about sleuthing for underlying causes of osteoporosis, and if there is one, treat that. I would also recommend, whether or not you take medication, that you eat a whole food diet, get proper nutrition, and exercise, including weight, cardio and balance training. I am doing a whole food diet about 80 percent of the time, and supplementing with vitamin D3 and K2 (a lot of doctors don't know about needing K2). I also started weight training, and play pickleball, which requires a lot of starts and stops, which I hope stimulates bone growth. Jumping rope is also an exercise that some do. Be aware that if your bones truly are fragile, some activities, including the ones I cited, could be harmful. I fell twice playing pickleball last year (which I remedied by buying real court shoes). You can also do a telephone consult with McCormack (not covered by insurance). You have to do you, whatever you are comfortable doing after doing your due diligence on researching options. Good luck!

Bella33355 profile image
Bella33355

Thanks everyone for such detailed answers, I truly appreciate your help and advice, I have been getting better advice here than from my previous endocrinologist who prescribed me taking osteoporosis meds without addressing the underlying issues. I have just found out that I have a gluten intolerance, will need to undergo also the genetics test to find out whether I have this Celiac disease which in my gastroenterologist's opinion is the main cause of my osteopenia in such a young age, I have lactose intolerance as well. My calcium D levels have been high for about 6+ months now but I have researched that if the calcium levels are high in the 24h urine test you are losing calcium and that isn't absorbed by the bones, this is the main thing that has been bothering me so far. I am not taking Calcium and D because of high levels in my blood test but my osteopenia isn't getting better with all the exercises and healthy lifestyle I am adhering to. But again whatever I read here gave me a hope.

MayGodBlessYou profile image
MayGodBlessYou in reply to Bella33355

someone i know, male, late 80s, has OP, has fallen a lot, just cause he's quite active, not unsteady. hasn't broken anything.

MAE902 profile image
MAE902

Bella. I’ve had osteoporosis for about 5 years , since I was 60. I walk 2-4 miles several times a week and do yoga . I’ve been lucky . No fractures eventhough I took a nasty fall this winter . My doctor wants to start me on Evenity and I’m concerned about it . My mom is a small boned person and has only fractured one arm when she fell on ice at 85 so I’m wondering if I really need treatment. No straight answers !

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