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66 and DXA shows Osteoporosis w/High Fracture Risk
Two years ago osteopenia. Last week DXA Osteoporosis with High Fracture Risk. No HRT since 1995 when I had a total hysterectomy. Premarin for about 9 months then quit because of the risks of heart attack. Fast forward, been taking Fosamax and Vit-D for about a year. DXA 1/2024 showed osteopenia. Now Osteoporosis w/High Fracture Risk. Primary wanted to start me on Evenity, but because of the black label box warnings I am too scared to take it. I do have a history of abnormal EKG’s and heart palpitations for which my cardiologist has me on Metoprolol twice a day. I asked for a referral for PT with Phoenix as they have therapists that specialize with osteoporosis, balance etc. My doctor sent the referral today. I’m so confused as to what to take. They all have side effects, Prolia is for life and Reclast can cause severe kidney problems. I’m going to try and find an endocrinologist that treats osteoporosis. Any suggestions or recommendations?
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@jozer
Since Medicare’s default coverage is every 24 months, getting an annual (12-month) scan requires your doctor to provide clinical justification for "medical necessity" using a reason like "monitoring osteoporosis treatment" rather than just "screening".
I'm not just idly wondering about my bones here. I'm taking injections every day (Tymlos) that produce a host of unpleasant side effects (nausea, dizziness, tiredness, muscle/joint pain, headache, and belly flab to varying degrees), and I need to know if it's working sooner than 2 years. "Monitoring osteoporosis treatment" is a valid medical necessity.
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1 Reaction@cbusgma2017 If you are taking Tymlos, then Medicare allows a DEXA more often - even more than once a year. I had two DEXAs that were less than a year apart, and Medicare covered them without any issues.
Also, you might want to try what many others have done: lower the Tymlos dose down from 80. Some people simply can't tolerate the maximum dose. All evidence so far says that even a lower dose is effective.
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1 ReactionGreat insight here; appointment next week will ask if he can request a medically necessary DEXA to monitor OP pharmaceutical treatment. I (perhaps stupidly) cannot go by the "ctx shows reclast is working" answer I got when I asked about getting a DEXA after only a year on reclast. If DEXA the gold standard and (I was told) Reclast a powerful drug that will work well why wouldn't we all want to see our BMD?? I have a feeling I'm not going to get anywhere because although he gave me a referral for DEXA (same place; no TBS they never heard of it) it would be out of pocket, and I can't get an answer on cost. Why is this so hard?
@jozer Why would it be out of pocket? If you are on Medicare and are taking meds, then the DEXA is covered (apart from any deductible costs you may have.)
@jozer
Yes, it comes down to how they bill it. Medicare does cover it for medical necessity and I am currently not on any meds right now.
High fracture risk is determined by other factors not a bone scan. Most fractures come from tripping or falling. Get rid of loose scatter rugs, rugs that you can trip on, strengthen your muscle tone. Do balance exercises. There are plenty of free videos on exercises for osteoporosis on you tube and the internet. Doctors will always recommend popping pills because they are instructed to do things that way. I have what they consider severe osteoporosis but I will not take meds. Diet and exercise is the way to go. I don’t think I will ever get another bone scan because it doesn’t tell the whole story. There could be an underlying health condition that is causing the osteoporosis. Do your research before you decide what to do.
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2 Reactions@cbusgma2017 You can pay out of pocket for a REMS scan anytime you want. More accurate than Dexa.
@dvargo
Thanks for reminding me to follow up on REMS. I asked Gemini for what "actionable information" I would get from REMS at this point (I'm 6 months into Tymlos injections), and it responded with a plan for me to get REMS now (self-pay $350 in my area sadly) and both DEXA and REMS at the 12 month mark. REMS apparently can detect changes sooner than DEXA and that can help keep my spirits up through the Tymlos side effects.
@cbusgma2017 I got a REM scan 6 months after starting tymlos, then 12 months after. Both scans showed decreasing BMD. When I saw the 12 month REM results, I really panicked. After all, BMD is supposed to increase at 12 months, not decrease! Fortunately, a few weeks later, I got a DEXA scan, and the results showed an increase in my spine by 10.4%. My doctor thinks the REM scans are inaccurate. See:
https://melioguide.com/osteoporosis-prevention/rems-bone-scan/
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4 Reactions@roseincalifornia
Wow, thank you! I had been (lazily) letting all the posts on forums like this one (and reddit) legitimize REMS to me. The MelioGuide article clearly explains REMS's limited utility in many cases and includes hard references to multiple independent studies rather than just echoing vendor-sponsored research.
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