If newly diagnosed with osteopenia or osteoporosis of spine
The first thing needed, to my way of thinking: x-ray of the spine
Why: DXA is limited. If the vertebra has had a compression fracture - which can occur without any pain (you can have one without knowing) - the t-score will be erroneous. The nature of a compression fracture is to make the bone appear denser. So the t-score will appear better than the one previously taken, before the fracture.
To my way of thinking, it's ridiculous to follow spine t-scores without knowing the full reasons behind the values. Baseline information about the vertebrae is a must. I don't understand why it's not standard protocol to x-ray the spine when osteopenia/porosis is diagnosed.
And, for every succeeding DXA, the information about compressed fractures is essential - operators are not supposed to include affected vertebrae in the calculation. Operators are also only to report the spine t-score if at least 2 vertebrae can be measured.
My cynical self is coming up with bad reasons why x-rays aren't part of the initial write-up. It's easy to throw medicine at a t-score. DXA salespeople aren't motivated to talk about machine limitations. If a t-score is low enough, insurers can refuse to pay for certain types of prescriptions and procedures.
I've had osteopenia of the spine, and now osteoporosis, on record since a DXA in 2020. In that time: three primary care docs and three endocrinologists - and none sought x-rays. Have I been seeing all the wrong people??
Only this week did I have x-rays done, and ugh, there were compression fractures, bone spurs and an inflammatory spinal arthritis. No, I had no idea. Only very mild back aches over the years that I attributed to growing older and less active. I did let my drs know about the aches.
If I could go back in time 6 years, I'd push for x-rays.
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New research reported today by @j1976 has changed my perspective on REMS. You can see that person's comments and my response here:
https://connect.mayoclinic.org/discussion/what-decision-to-make-regarding-osteoporosis/
My cynical self after dealing with the system with my Loved one's Osteoporosis, a fall, L5 fracture, nerve pain, and unsuccessful treatment since. Gives me the impression that the reason for no Xray is insurance doesn't allow it, and most Providers won't buck them.
If you find one that will. Hold onto them.
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1 Reaction@kfhoz Thank you for sharing this! Disheartening to hear about REMS.
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1 Reaction@cman55 I'm so sorry to hear all that your loved one's gone through. From what I've read, it sounds as if many people are living with compression fractures without knowing they have them. If they are that common and silent, it would seem, to me, to point to a need for better imaging than the standard DXA. The vertebral fracture assessment (VFA), which some DXA machines/centers provide, seems a good minimum, if the VFA can be depended on to provide reliable info. (But I'd still want xrays.)
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1 Reaction@karyn23 Thanks, she has had many MRI's, 2 CT scans, and 2 EMG's in the 2 1/2 yrs of her ordeal. She has been treated including Kyphoplasty, and Spinal Cord Stimulator, many various injections, and epidural/ablations. Relief from nerve pain is brief, and fleeting. Mostly non-existent lately.
It all started with Osteoporosis, and a fall. I am for people getting whatever they need from our Medical System to avoid all that my Loved one has experienced.
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1 Reaction@cman55 Oh boy, I'm so sorry to hear about all the pain and trials. Yes, yes, to getting whatever help is available. I'm so grateful for this community and the support generously shared.
@njx58
This all so frightening. I was in an accident 2 years ago. Fractured my spine T12,L1. The nightmare began. after a few months of recovery,my other doctor sent me for a DEXA scan. I was 63 and female. Hadn't been told prior to have one. I'm health, exercise and eat correctly.. I had -4 osteoporosis. Started me on Tymlos once my insurance stopped playing the cost game. Tymlos was horrific. I had every symptom possible. After about 4 months, the heart palpitations started so then she had to get the insurance to switch to another medication. That took 6 months. Now I am on Prolia. First injection was February, so far so good, but back pain is still with me. My insurance is Fed. Blue Cross/Blue Shield.. My doctors since the accident have stated I need via Disc procedure because my disk is compressed and fragmented. But insurance is making me go through lame procedures. Steroid injections. Latest one was Lumbar Medial Branch Block Bilateral. Now I will be turning 65 and making the choice for Medicare. I hope the procedure gets approved. As far as getting the -4 score lowered seems like an impossibility. I hate being negative, but there really doesn't seem to be anyone getting better from Osteoporosis.
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5 Reactions@cmbaczenski How long does your doctor expect you will be on Prolia and do they have a plan for what to take if/when you stop the Prolia? I am 76 and also have -4 in my spine, but I have never fractured. I am not taking any bone meds.
@cmbaczenski Oh my goodness, you've been through so much. I'm so sorry. I hope you get relief from the back pain soon. I am pretty new to all of this - diagnosed with osteoporosis last December - so I don't a lot about the road ahead, but I'm holding hope, and feeling buoyed by the support and guidance here - it means the world to have each other.
@karyn23 yes, I’m new here too, but it’s the best! Learning a lot in a short time