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Significant osteoporosis: I need a bone plan
Osteoporosis & Bone Health | Last Active: Nov 27 8:02pm | Replies (117)Comment receiving replies
I am avoiding Prolia because of the drop in bone density when you go off. I think a lot of your problems could have been averted with better advice on calcium intake, better monitoring, and starting at a lower dose. I started Tymlos at 2 out of 8 clicks of the pen and am still not up to full dose and my doc is fine with it. Ditto Reclast. My doc will give me only 1mg and test to see if that is working, after my Tymlos.
I went 14 years with osteoporosis, with no osteoporotic fractures, but when I did finally fracture it was 3 vertebrae and so painful and for a few months I lost my independence. It was from one stupid movement. Just make sure you don't wait as long as I did.
It sounds like you need a better doctor, rather than avoiding meds. But I don't know your DEXA scores. If insurance was paying for Tymlos I assume not good.
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Hello WindyShores, It was definitely negligence on the part of the "bone health" people who were supposed to be monitoring me while on the Tymlos. It was about five months and after massive spinal surgery that they finally rechecked the blood chemistry even though I had an elevated calcium of 13.3 and other crises during the hospital stay for the surgery. The neurosurgeon set me up with the negligent bone health group and then put the blame for the mess on me ignoring my request to refer me to a different endocrinologist. It has been exactly three years since the surgery and I'm still trying to get help to monitor bone health with an elevated N-Telopeptide level that needs to be resolved. Normal is 6.2 - 19.0 uM BCE. My last three values were 33.2 uM BCE, 25.5, back up to 29.9. If anyone has any knowledge about elevated N-Telopeptide values, I would dearly love to hear about it.