Any non fracture members?

Posted by rudysmom @rudysmom, May 18 7:24am

I guess I’m just looking for some encouraging words. I was diagnosed in February and still working through the different stages of grief/loss. I seem to have more days stuck in depression/sadness.

So, was just wondering if anyone on here has dealt with OP for quite a while and hasn’t fractured? I know you can fracture even if your scores are osteopenia range. I feel like everyday I’m just waiting for a fracture to happen. Im exercising 6 days a week and watching my food intake. I’m just hoping as time goes on this feeling lessens. Sometimes I’m not sure if it’s the diagnosis that’s making me sad or just the fact that I’m getting older, I’m 60, and reality has finally set in.

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Profile picture for yds @yds

In response to the question of rudysmom, I am 73, and was diagnosed with osteoporosis when I was 51 years old. Thankfully, I have not fractured. I started on alendronate from 2004-2010, went drug holiday from 2010-2019, then back to alendronate from 2019 to early 2025. None of my doctors were tracking, and I did not know any better about limits on the use of alendronate until last year. My doctor put me on Tymlos in June 2025 with the most horrible side effects which I have previously written about. Stopped Tymlos in October 2025, then doctor put me back on half-a-dose of alendronate in November 2025. I decided to stop six weeks later and have no plans for returning to any osteoporosis medications (or that doctor). I have "used up" the allowed time for antiresorptives (alendronate); I will never try Tymlos again or Forteo for that matter; I can't take Evenity or any medication that increases my risk for vascular disease because of a strong family history on having this disease; and my oncologist would not allow me to go on HRT because I had breast cancer in 2000. Because there are currently no viable options for me in the long-term, I have chosen not to go on Prolia. I am managing my osteoporosis through improved nutrition, supplements, and Onero. In May 2026, my CTX score was 241 and my P1NP was 35.4---both very positive outcomes. Although my most recent DEXA scan shows severe osteoporosis for my hips (-4 T score) and osteopenia for my spine, a REMS scan last January showed a low five-year risk of fracture on my hips and femoral neck (3-5%) despite the -4 T-score on DEXA, and a slightly higher risk for my spine (5-9%). Although I have been doing DEXA scans since 2004, I don't trust it completely, especially given my very small frame. This is why I did REMS, which is far more reliable (it is not covered by insurance). In fact, the T-score results and fracture risk information provided by REMS are not aligned with the results of my DEXA scan's T-scores. If you are concerned about fracture, you might consider getting a REMS scan. The REMS scan results (along with the results of relevant blood tests) will provide you with information which you and your doctor could consider as you think about a way forward.

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@yds Recent studies have shown REMS scans to be not accurate. DEXA scans are not perfect, and the results vary by a few % on different machines, but they are the most accurate measurement we have today.

Since I have already had 3 REMS scans ( total cost nearly $1000!), I didn't want to believe REMS were not accurate either until I did more research on it.

Your -4.0 t-score is probably a lot more accurate assessment than your REM score.

btw: it is true that DEXA scores can vary, especially on machines by different manufacturers. That is why it is very important to get measured by the same machine, so you can see the trend.

Peer-reviewed studies showing the inaccuracies with REM scans:
Chan, D. C. C., Chen, W., Yabsley, E., & Pocock, N. (2026). Demographic determinants of REMS-derived BMD and fragility score. Osteoporosis International, 1–11. https://doi.org/10.1007/s00198-026-07960-4

Bobelyak, M., Vaculik, J., & Stepan, J. J. (2025). Bone mineral density assessment using radiofrequency echographic multispectrometry (REMS) in patients before and after total hip replacement. Osteoporosis International, 36(1), 2237–2244. https://doi.org/10.1007/s00198-025-07685-w

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Hey, Love, don’t psych yourself out! My osteopenia became porosis with my 2024 Dexa,& I have had no fractures. I’m now glad I’ve taken so long to figure out how to deal with it because EVERY friend I have who has tried infusions, injections, Prolia, Evenity,& what not are suffering huge “unexplainable” side effects. I’m seeing my first rheumatologist this week & treading VERY carefully with “treatment” ideas. I don’t think they know enough about it to keep throwing all these drugs at us based on the fear of fractures. Breathe🙏❣️

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Profile picture for gently @gently

jozer, earlier dexa would make a difference. I consider 50 to be the preferrable age to begin having imaging. We start losing estrogen in our thirties. Osteoporosis is underserved. Most research money is applied to deadly diseases. Osteoporosis doesn't have independent specialists, almost anyone can prescribe for osteoporosis. One of the bone specialists says that PCs know more about osteoporosis than endocrinologists.

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@gently
What about Orthopedic Surgeons, do they ever evaluate and treat bone loss? I would think they have to know something because older people are getting hip replacements, etc and they need to k ow the quality of your bones for surgery. But they are probably all focusing on cranking out surgeries and not meeting with patients regarding bone loss and treatment? I don’t know. Just wondering…I have the book Unbreakable by Orthopedic Surgeon Dr. Vonda Wright, but haven’t read it yet. Wondering if anyone consults with Orthopedics for their bone loss?

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Profile picture for gently @gently

jozer, earlier dexa would make a difference. I consider 50 to be the preferrable age to begin having imaging. We start losing estrogen in our thirties. Osteoporosis is underserved. Most research money is applied to deadly diseases. Osteoporosis doesn't have independent specialists, almost anyone can prescribe for osteoporosis. One of the bone specialists says that PCs know more about osteoporosis than endocrinologists.

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@gently
Yes, 50 (or sooner) is recommended by those who give a damn like Keith McCormick. That way you can get a baseline for estrogen loss.

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Profile picture for cliffdweller @cliffdweller

@gently
Yes, 50 (or sooner) is recommended by those who give a damn like Keith McCormick. That way you can get a baseline for estrogen loss.

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@cliffdweller
I think 50 is the recommendation for high risk people (family history, under 127 lbs) etc. but so few doctors know that. Then there so manny people living in high risk bodies that don’t know it because of undiagnosed health issues. Why not just do a baseline on everyone at 40? I had to really advocate for getting a DEXA at 50. And that’s with family history and being on Levothyroxine, and being thin (although my doctor never noticed that). I also had a DEXA at 36 after a freak incident. So I know I reached peak bone mass and that my bone loss from estrogen loss around menopause.

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Profile picture for cliffdweller @cliffdweller

@cliffdweller
I think 50 is the recommendation for high risk people (family history, under 127 lbs) etc. but so few doctors know that. Then there so manny people living in high risk bodies that don’t know it because of undiagnosed health issues. Why not just do a baseline on everyone at 40? I had to really advocate for getting a DEXA at 50. And that’s with family history and being on Levothyroxine, and being thin (although my doctor never noticed that). I also had a DEXA at 36 after a freak incident. So I know I reached peak bone mass and that my bone loss from estrogen loss around menopause.

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@cliffdweller

I am with you on this. I went through menopause almost over night with no symptoms other than loss of periods at 38. I should have been given a dexa then in my view. I agree with you that a blanket age for baseline at 40 sound good. Unless of course they don't want us to avoid osteoporosis or at least delay it or minimize it's effects.

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Profile picture for cliffdweller @cliffdweller

@gently
What about Orthopedic Surgeons, do they ever evaluate and treat bone loss? I would think they have to know something because older people are getting hip replacements, etc and they need to k ow the quality of your bones for surgery. But they are probably all focusing on cranking out surgeries and not meeting with patients regarding bone loss and treatment? I don’t know. Just wondering…I have the book Unbreakable by Orthopedic Surgeon Dr. Vonda Wright, but haven’t read it yet. Wondering if anyone consults with Orthopedics for their bone loss?

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@cliffdweller, orthopedic surgeons don't usually treat bone loss unless they have a patient with bone loss for whom they are planning surgery. They are usually focused not only on the surgical, but also on their specific subspecialty--neck, shoulder, spine, hip etc. We hear of patients having surgery without bone sufficient to hold hardware. Sometimes that is because of the urgency of a procedure. But it is a bit outside the surgical focus. Sometimes they are unwilling to prescribe and send a patient back to general orthopedics or back to an endocrinologist with instructions to return after six months of medication most commonly anabolic medication.
I saw one orthopedic surgeon who laughed that all of my calcium was in my arteries and none in my bones. She didn't advise or refer me.
I saw a spine surgeon who looked at my images and directly called in a PA to advise me on medications; I wasn't a surgical candidate and would be assigned to the PA.
You are probably better off with someone who specializes in osteoporosis (hard to find), but if you even wonder if surgery would help, it is good to see an orthopedic surgeon.
Some orthopedists perform palliative injections within their specialty.
Let us know about the book. I have the vague impression that Wright is all about muscle cross talk and bone strength.

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I should have said “Orthopedics” rather than Orthopedic Surgeon ; guess I was thinking surgeon since I just had hip replacement. Also, it seems rare to ever be referred to orthopedics these days. Everyone makes you go to physical therapy first at those awful PT facilities that are now on every corner akin to mattress stores. I could not get an MRI for my hip (which was primary care thought was a labral tear) until I went to PT first. The PT caused more pain and wasted time. Sorry about your experience. No one should be treated like that. We are living in sad times…

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Profile picture for cliffdweller @cliffdweller

I should have said “Orthopedics” rather than Orthopedic Surgeon ; guess I was thinking surgeon since I just had hip replacement. Also, it seems rare to ever be referred to orthopedics these days. Everyone makes you go to physical therapy first at those awful PT facilities that are now on every corner akin to mattress stores. I could not get an MRI for my hip (which was primary care thought was a labral tear) until I went to PT first. The PT caused more pain and wasted time. Sorry about your experience. No one should be treated like that. We are living in sad times…

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@cliffdweller Sorry to hear about your experience with PT. Unfortunately since fee for service for physicians has gone away and insurance companies and the government have taken over health care, doctors have certain ways they have to practice to get paid for their service to include PT first. The patients and doctors do not win any longer, since it has become a business. There are still many doctors that do care, thankfully.

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Profile picture for gravity3 @gravity3

@sistermac

Sorry about the news you received. Can you share your dexa scores with us?
Is your physician someone who is experienced in treating osteoporosis or are they referring you to someone else. It is common here for people to talk about doing their own research on osteoporosis and treatment. Everyone is so different with different medical histories. If you go to the top of this page and click on the blue title Osteoporosis and bone health it will present a list of current topics of discussion. Hang in there. We are all in it together.

Another resource for information is OsteoBoston.
They have an excellent group of videos on YouTube and a website.

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@gravity3 my c- telopeptide score is 928… my t scores are -2.7 all due to anastrozole for 4 years one more to go..everything else is good

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