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Scared by latest DEXA showing severe osteoporosis. Need advice.

Posted by ripley @ripley, Apr 28, 2024

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.

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lorikay | @lorikay | 4 days ago
In reply to @robandsandra "Dear group: My wife was recently diagnosed with advanced/severe osteoperosis. She has DEXA scores ranging from..." + (show)
@robandsandra

Dear group:

My wife was recently diagnosed with advanced/severe osteoperosis. She has DEXA scores ranging from -4.1 to -5.2 for lower lumbar area. I am researching this and this seems very severe. Her family doctor wants her to go on Evanity right away for a year. My wife also is also weak on her left side due to previous surgery in brain. She is only 59 and we have a special needs daughter, so life is demanding. We are concerned with jumping right into a heavy duty drug, but the DEXA scores are so high that I am very concerned. And we also have extensive dental work that needs to be done which can be complicated when on these drugs. Does anyone have any suggerstions for this newbie into this world of bone health? With many thanks.... We are looking also for a really good endocrinologist (in Florida)

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I am so sorry you are having to deal with all of this. My heart goes out to you with the demands of caring for a special needs daughter. I shared your concerns with a "heavy duty drug" when I was diagnosed with osteoporosis (DEXA -4.2). I went on Evenity, myself, for a year and am glad I took my doctor's advice. With regard to dental work, you might want to find out -- from her doctor -- how big of a risk it actually is for her.

When I was first diagnosed, I spent far too much time on the internet seeking information. At some point, I had to place faith in my medical team and not concern myself with the contradicting findings from medical studies, the (often) horror stories of others, and the well-meaning advice of those who faced their own set of challenges on this journey. I am learning that there is no one-size-fits-all solution. And, if I am going to place my bets on the best outcome for me, I have to listen to my own doctors.

Good luck! Your wife and your daughter are lucky to have you.

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