Scared by latest DEXA showing severe osteoporosis. Need advice.

Posted by ripley @ripley, Apr 28 4:22pm

I'm a 73 year old woman diagnosed with osteoporosis in 2017. (I am petite, 5’2” and 112 lbs and have heard that may affect DEXA score accuracy.) Since 2017, my DEXA’s every 2 years stayed quite consistent. However, my latest DEXA shows a significant decrease in BMD, and it scares me.

2024 Total Hip: -2.7 (2021 -2.4, 2019 -2.3, 2017 -2.2)
2024 Femoral Neck: -3.0 (2021 -2.5, 2019 -2.7, 2017 -2.4)
2024 Lumbar Spine: -3.9 (2021 -3.2, 2019 - 3.3, 2017 -3.2)

I've never broken or fractured a bone. I take calcium, vitamin D and collagen peptide supplements every day, but have never been on any prescribed drugs for osteoporosis and especially would like to avoid bisphosphonates. I know my endocrinologist will pressure me to take something. At my last visit, he suggested Reclast. The many side effects of this drug concern me, especially lasting bone and muscle pain. I have fibromyalgia, so already have daily body pain, sometimes severe, so I worry about increased pain from a new drug and/or a fibro flare.

I think two reasons for my recent low DEXA scores is that two years ago I was diagnosed with fibromyalgia, which has limited my physical activity, and I started taking a daily PPI. I have tried to wean myself off the PPI, without success, but will try again. Also, for many years I've had a thyroid condition and have taken Synthroid.

Will I have to take some kind medication for my bones? I would appreciate any advice. I see my endocrinologist in two days.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@patjack2

I have read that there is a better scan than a Dexa Scan. It is not widely distributed. I just can't remember the name of it. I've read that it gives a better marker for the level of osteoporosis
thanks

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@patjack2 are you referring to the TBS? Which is bone quality? Or another type of scan for bone density?

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Aha! I just found the name of the test. Echo Light scan for bone quality. I had read that it is far more accurate than Dexa scan. I’m wondering if it is available in Florida.

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REMS in Florida
University of South Florida (Mary L. Peters, R.T.)
Health Informatics Institute
3650 Spectrum Boulevard
Tampa, 33612 FL
813-821-8011

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Hi,
I am 71 and just had my second Dexa with very poor results. Left total femur: -3.2, Right total femur: -2.6; Lumbar spine is -1.7. I was diagnosed with osteoporosis in 2015 and have never taken any meds.

I was considering Prolia but now that I am reading the info here, will consider Tymlos.

My question: Has anyone heard of MBST, also called magnetic resonance therapy in the U.S. It is a therapeutic form of an MRI in use in the UK, throughout much of Europe and in some Arab states as well, to treat osteoporosis. There are no side effects. There is evidence that it can reduce the chance of a fracture in patients with osteoporosis, increase bone density, and reduce pain. Its effects appear to last between one and two years. There is a research study cited in the NIH: ncbi.nlm.nih.gov

My previous reluctant decision to try Prolia was based on a 2023 French study-available in the National Library of Medicine- involving 180k women which included oral biophosphates (alendronate, risedronate, or ibandronate), zoledronic acid, denosumab (Prolia), raloxifene, and teriparatide. The study duration was 11-17 months with 38-43 months follow-up. A number of the meds reduced vertebral fractures but only Demosumab reduced incidence of fractures significantly in both vertebrae and hips. Zoledronic Acid did reduce fractures slightly in hips, from 10.52/1k to 9.49/1k. All other meds showed some increase in hip fractures. After treatment ended, all meds showed an increase in incidence of fractures.

If this is too much info, let me know!

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I think the scan you may be thinking of is the REMS Echolight. It is said to be more accurate and reliable, not prone to error like the DEXA, so you don't have to stay with the same equipment for all your scans. Most importantly for me, it provides a fragility score and measures bone quality which the DEXA does not. Bone quality is a vital part of fracture risk and can be better or worse than BMD. REMS is gaining recognition in N.A. and received FDA approval. I just had one last week in Calgary, Alberta, Canada for ($150.00 CA.) which was well worth it. It isn't covered by insurance yet. Dr. Doug Lucas has a good video on the REMS and there are NIH studies.

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Yes, Dexa isn't the whole picture. Have you lost height? If not, that is a very good sign. Are you taking natural calcium (e.g. milk)? My specialist prefers that to tablets. No weight-bearing exercise is an issue. However, the whole is more than the sum of its parts and if you ever stop Prolia, you have a rebound of bone loss. If stopping it is unlikely, then that is not an issue. I am wondering why you don't also consider bisphosphates. They also effective in that French study, unless I am missing something.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10494501/

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@debbie1956

I think the scan you may be thinking of is the REMS Echolight. It is said to be more accurate and reliable, not prone to error like the DEXA, so you don't have to stay with the same equipment for all your scans. Most importantly for me, it provides a fragility score and measures bone quality which the DEXA does not. Bone quality is a vital part of fracture risk and can be better or worse than BMD. REMS is gaining recognition in N.A. and received FDA approval. I just had one last week in Calgary, Alberta, Canada for ($150.00 CA.) which was well worth it. It isn't covered by insurance yet. Dr. Doug Lucas has a good video on the REMS and there are NIH studies.

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Thank you

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@glojo

REMS in Florida
University of South Florida (Mary L. Peters, R.T.)
Health Informatics Institute
3650 Spectrum Boulevard
Tampa, 33612 FL
813-821-8011

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Thank you. It’s nice to hear it’s moved into Florida

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@researchmaven

Yes, Dexa isn't the whole picture. Have you lost height? If not, that is a very good sign. Are you taking natural calcium (e.g. milk)? My specialist prefers that to tablets. No weight-bearing exercise is an issue. However, the whole is more than the sum of its parts and if you ever stop Prolia, you have a rebound of bone loss. If stopping it is unlikely, then that is not an issue. I am wondering why you don't also consider bisphosphates. They also effective in that French study, unless I am missing something.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10494501/

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No, I haven't lost any height. I take calcium supplements and through dairy products, and Vit D supplements.

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@ripley

No, I haven't lost any height. I take calcium supplements and through dairy products, and Vit D supplements.

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I haven't lost any height of note, maybe 1/4 inch. No fractures at 69. I have switched from calcium supps to Lactaid milk for my calcium dose and my specialist likes that, saying that natural food sources are preferred.

Another, unrelated specialist notes that studies show that OTC supplements (unregulated) often are tainted or don't have the ingredients advertised...and they can be hard on the liver/kidneys. He went to MIT and Johns Hopkins, and is very scientific, so I listened to him on this.

As far as my osteo medication goes, my specialist wants me to continue with bisphosphonates (Atelvia). I just came off a one-year "holiday" from it and am supposed to go back on it. I am meeting with my specialist to go over the newer alternatives to bisphosphates, like Prolia. I will update my post (if I can locate it) after this May 13 appt.

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