Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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@kathleenintexas

I also had inaccurate DEXA scan results. Baseline in Nov 2022 was -5.1 and next scan in Dec 2023 after a year on Tymlos showed -3.7 in spine, which is not possible. Dr. Keith McCormick said it is likely the technician did not place me on the table correctly. So disappointing to not know what Tymlos is doing for me. Hope to get another scan before the end of the two years on Tymlos.

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@kathleenintexas did McCormick say to disregard those results entirely? I wonder if, even if there was some incorrect placement, if that rather large increase on the report would still indicate substantial gain, even if unknown exactly.

I had a 20% gain in spine and 9% gain in hip and have been told the technician measured a different "area of interest" than the previous scan. Nevertheless I was happy to see the trend.

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