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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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mayblin | @mayblin | 22 hours ago
In reply to @lbroomayo1 "I don't mind you asking. I do use a corsett; Maidenform Waist Clincher found on Maidenform.com...." + (show)
Profile picture for Lynn Brooks @lbroomayo1

I don't mind you asking. I do use a corsett; Maidenform Waist Clincher found on Maidenform.com. The corsett has metal supports and shapes my waist and torso. But more importantly, it shapes, supports, and holds my spine. With the estrogen, the time I wear the corsett has been reduced. I wear it mostly in my house, or with certain clothing that is waist defining.

I have excellent bones and density. When my orthopedic providers show me the Xrays, I'm shocked. It doesn't look like the Xray of a 69 year-old-woman. I started using estrogen and progesterone at age 62. However, my bone marrow is not nearly as healthy. I have full blown anemia in knees and hip joints and I use leg warmers (dancers' muscle warmers) and it alleviates 100% joint stiffness, pain, and discomfort. I also wear men's or boy's thermal underwear under my sleepwear all year-round while sleeping. This keeps my hips and knees warm and blood circulation working well. I am working with providers to improve bone marrow and liver function.

Remember that if you use pure estrogen you have to balance with progesterone. I cycle my use of hormones, similar to birth controll pills. You could start monthly bleeding cycle, if you are post menepausal or if your reproductive organs are not atrophic. I test for ovarian cancer and bone cancer using a simple blood test Ca 125, which tests for cancer antigens, and Ionized calcium blood test, which mearsure calcium in the blood and is known to be a predictor of bone cancer. Both tests use reference range to identify evidence of cancer.

My last warning is, there is only one company that manufactures pure estrogen here in the US and Canada. Don't be fooled with knockoffs or other products. It can be lethal after taking pure estrogen for two or more years. There is no replacement one you start this regime. I started with the smallest dose and then gradually use the middle dosage amount for the last six years. Best regards.

Wilma Lynn Buie (formerly, Lynn B. Brooks), MS EdD, LPCA Candidate, NBCC examined, Associate Degree Nursing Education, PBT ASCP Certified, ASCP Board examined

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Thanks so much for sharing all those details - it’s really interesting to hear how you’ve found what works for you. I appreciate you taking the time to explain your experience.

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mandie4712 | @mandie4712 | 10 hours ago
In reply to @anewyorker "@mandie4712 I'm so sorry to hear about your situation. It's the fear of everyone on this..." + (show)
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@mandie4712 I'm so sorry to hear about your situation. It's the fear of everyone on this board, I suspect, that bone breaks such as your femoral neck and vertebral fractures leave you so incapacitated. I do hope that good medical care can get you back on your feet.

Though I'm in no way comparing my situation to yours, I have a somewhat limited ability to walk because of orthopedic problems unrelated to osteoporosis but stemming from more garden-variety problems such as stenosis and arthritis, compounded by the aftereffects of a compression fracture at L1 that resulted from a trip and fall. I'm having a two-step medical procedure starting next week that my doctor hopes will reduce the pain and allow me to walk longer distances than I can now, which is limited to about 20 to 25 minutes before the pain gets in the way.

I hope the nurse gives you good information. Your anxiety and fears are totally understandable, and I hope things get better for you.

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@anewyorker
Thanks unfortunately I will never walk again as my muscles never regained their strength after having rod and screws put into femur. My consultant was very arrogant as for 5 years I kept saying something isn’t right as couldn’t still can’t lift top of leg up of seat at all but he ignored me. I think I lost trust in him and lost confidence in everything. I don’t tolerate meds very well that’s why I’m concerned about the injections but I will give them a try. One person told me that the injections caused her to have a weak bladder and as I have to be lifted I’m not fast getting anywhere. If I was to do injections in bed I’m then bed bound so I was scared about wetting the bed if this side effect is true. I will speak to the nurse see what she says. Good luck with your procedure I hope it helps you so you can walk longer.

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