New to Osteoporosis

Posted by hollymarie54 @hollymarie54, Feb 5 3:37pm

Found out recently I have osteoporosis at -2.6 spine. The next lowest number is 1.9 femoral neck. I’m in the process of testing with an endo. to rule out anything that might have caused this to happen “early” (I’m 54). So far she isn't seeing anything. Super grateful for all the posts I’ve read, and not sure what my endo is going to recommend. But I’m looking for thoughts/suggestions on what could make most sense for treatment since I’m currently not severe Osteo. I’m pretty active already, but have upped my nutrition which was needed and started HRTs couple weeks ago. Thank you!

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@oopsiedaisy

Welcome. I was diagnosed with osteopenia at age 53. I started HRT at 51 but didn't have my first DEXA until 53. Despite the HRT, a good diet, resistance training, and calcium, Vit D, and Vit K supplements I progressed to osteoporosis by age 57. I also had a tremendous amount of stress in my life at the time which may have contributed.

I was placed on Fosamax at 57 and took it for over five years. I had a T8 compression fracture at age 62 so the bisphosphonate didn't work effectively for me. My spinal T-score was never worse than -1.6.

I'm off the Fosamax and have done 4 months of Tymlos, 3 months off, then 1.5 months of Forteo to build bone. Unfortunately, the Forteo has resulted in joint pain that is so bad I can't exercise. As someone who has exercised regularly for 13 years now (lifting weights, running, cycling, etc.) not being able to exercise is not an option.

I hope your path doesn't follow mine and the HRT and other lifestyle options work for you. I just wanted to chime in to say that sometimes HRT doesn't always work. One recommendation I have is that if your doctor wants you to try Fosamax, make sure they are regularly assessing you and don't leave you on it for two long. Fosamax worked for me for two years then was no longer effective. It also slows down new bone growth when taken for long periods. The recommendation is to take it for between 3 to 5 years but that may be too long for some individuals like me who end up developing brittle bone that fractures easily.

Good luck!

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Thank you for sharing your story. I appreciate it. Did you have testing done to rule out other causes? I’m in the process of that now with my endo, and so far we haven’t found anything. I personally think my OP is linked to being a runner, underweight, and not replenishing my body properly. Learned my lesson. 🙁 It seems a good path, based on research and listening to great advice/thoughts here) to start with an anabolic followed by bisphosphonate. I’d prefer to not do meds, but am scared of further decline in spite of efforts like you’ve done. I’m sorry to hear of your joint pain on Forteo. Will you try another bone builder? My thoughts are with you.

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@loriesco

@lurawilson my age is 68. I have had DEXA scans every year since 1999. I was only in osteopenia and never diagnosed with osteoporosis in fact in 2023. I was determined by DEXA to be normal. When they opened me up for cervical spine surgery, my bones fell apart in their hands. C5 was paper thin. My surgeon said that DEXA scores are generalized. I have had complete hip and spine replacements so the places that they tested were not indicative of all parts of my body. Now I’m doing the DEXA with the TBS analysis and that is supposed to be better and more consistent from year to year. I’m still not testing as having osteoporosis just osteopenia, but my surgeon made it a .2 weeks ago to put that my bones are demineralized. I can tell you I showed Improvement at the time I started TYMLOS which was one year after the RECLAST infusion. And six months after that, I showed more improvement. This was on the CTX/P1NP test scores. Don’t get too hung up on some of these tests. My endocrinologist explained why the numbers aren’t exact and why he wasn’t so keen on establishing a baseline and testing me a few months later it has to be over the long haul.
The plan after TYMLOS is to go back and do two or three more years of annual RECLAST infusions. And then I am supposedly done. My doctor said for life I’m not so sure but I’ll find out when the time comes. He is a renowned endocrinologist at Ucsd. I hope that helps!

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Thank you for this detailed information and I sure hope your plan helps! I’m grateful to everyone who has contributed to this site! It helps so many of us make a decision on what to do, feel more confident and not so afraid.

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@hollymarie54

Thank you for sharing your story. I appreciate it. Did you have testing done to rule out other causes? I’m in the process of that now with my endo, and so far we haven’t found anything. I personally think my OP is linked to being a runner, underweight, and not replenishing my body properly. Learned my lesson. 🙁 It seems a good path, based on research and listening to great advice/thoughts here) to start with an anabolic followed by bisphosphonate. I’d prefer to not do meds, but am scared of further decline in spite of efforts like you’ve done. I’m sorry to hear of your joint pain on Forteo. Will you try another bone builder? My thoughts are with you.

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Sorry the late reply; missed this earlier.

I had all the usual lab tests recommended to rule out other potential causes like primary hyperparathyroidism. All labs were normal.

I've also been active, used to run quite a bit but quit that 25 years ago. I started lifting weights 13 years ago but prior to that was pretty much a chronic cardio kind of exerciser.

I've never been underweight and love food so definitely not an undereater, always had regular periods, etc.

I took a couple of weeks off the teriparatide and restarted it last week. So far the joint pain has not returned. I'm hoping it doesn't but it took awhile for it to get bad last time. I am willing to give it another shot. I am concerned about whether it will work for me because I was on alendronate for so long and prior treatment with an anti-resorptive can diminish your gains.

One day at a time 🙂

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