@osteopatient2026 I have had extensive testing over a 20 year period regarding the cause of my osteoporosis. Obvious ones: lost both ovaries when I had a total hysterectomy and bilateral oopherectomy for severe endometriosis in 2005. I went into surgical menopause overnight at age 33. It took three years to find an HRT my body would even absorb or respond evenly to. Reason two: anorexia nervosa for six years in my 30s, with bmi 14-16 range for six years. Reason 3: lifelong hypothyroidism diagnosed at age 16 when I had a goiter and I have been on levothyroxine for 38 years. I tested negative however for hashimotos, and extensive testing for parathyroid issues was negative. I had a duodenal and intestinal biopsy done in my 30s for Celiac disease, also negative. Many other blood tests but not sure of them all. My first dexa scan was at age 34, one year into surgical menopause, and it was -3.2. No known reason since I was only in surgical menopause one year, and anorexia came later. Likely I was born with a lower bone density. I was underweight as a teenager training intensively in ballet. First period was 16, last 33. My worst dexa score was -4.1 in 2014 at age 42 just before I started prolia. prior to that I avoided bone meds, though I did have one stress fracture in foot when I was younger. No others. I was already exercising a lot, including weight lifting (up to 100 lb deadlifts etc), ballet etc, was on calcium and vitamin D supplements and estradiol HRT. I do not tolerate progesterone or female testosterone HRT. My vitamin D tests healthy in 45-65 range.
I can not just not do any drug at this point with the danger of coming off prolia. Eventually I would like to, but right now i need to mitigate the effects of having come off prolia and what that is doing to my body. One Reclast infusion was not enough. Given I was on Prolia for 11 years at a young age with severe scores to start with, I am at higher risk than your average 70 year old who was only on it a few years. Sure, -2.7 isn't bad right now, but this is only after six months of stopping Prolia, combined with taking a Reclast infusion in March. At this rate I will be in the -3 or even -4 range in one year unless something more is done. I may or may not fracture. I've heard too many horror stories to just relax and let it go. i am 54, work full time, take care of my elderly father, just lost my husband a year ago, I am not ready for that kind of debility. Had I known in 2014 how hard Prolia is to come off, I would never have started it. I was desperate. Reclast was not an option back then because I had kidney issues due to anorexia. That was 2014 and black box warnings for Prolia were not heard of yet.