Going from Prolia to Reclast timing

Just updating on my situation. My hives never went away completely since my Reclast infusion in March. They have been constant and worsening up until two weeks ago. I went to an allergist (was on a waiting list since May for him) and though my skin test was negative in office (he tested for weeds, mold, dog, dairy, wheat etc), the next morning I broke out in hives on every single poke. He had nothing to say about it, gave me nothing to help, and just told me to cut out all dairy, gluten, wheat and sugar despite my long history of anorexia nervosa and being a low normal weight as it is along with osteoporosis. He swears it helps his patients. So I have been doing this for two weeks. Hives have completely disappeared but I am still itchy all over so I dont know. I was starting to get tight and sore throat with itching in that too which still remains, and was getting nausea and headaches along with shorness of breath but those went away. I have been on Zyrtec x2 day per PCP since May plus famotidine and hydroxyzine (another med for hives PCP prescribed) but they do not take away itching or hives, just make it more mild. Allegra, Claritin and Benedryl did not work at all for me. I had a five day course of prednisone in July due to the severity of my hives and breathing difficulty. It helped but they came right back with sob after. Allergist did not seem too concerned.
Moving on to the situation with being off Prolia due to insurance denial after being on it for eleven years with great success (was due for shot in Feb) and my first Reclast infusion in March to mitigate the effects of going off Prolia, I had a follow up dexa scan yesterday and my bone density has taken a nose dive. L spine went from -2.2 in 2024 to -2.7 yesterday. Hip went from -1.1 to -1.3. I suppose the prednisone didn't help, but i was hoping my scores would stay steady with the Reclast infusion. At least that was the ideal. I'm not sure how much they will keep dropping. I'm waiting to hear from my doctor today on the results and what to do.

So my doctor wanted me back on Prolia since Reclast is not stopping the drastic bone loss I am experiencing (spine dropped from -2.2 to -2.7 in six months, and hips -.8 to -1.2). I really really do not want to go back on Prolia, plus insurance is not covering it. I asked about a second dose Reclast but I would have to wait six more months. I am very worried about how fast my bone density is declining even with the first Reclast infusion. I'm really not sure what to do. Do I wait it out and take my chances? I just fear if I go back on Prolia I will never get off, and with insurance issues I will be broke very quickly. I'm already on an Estradiol HRT patch, taking supplements, exercising etc. I am only 54 and terrified of rebound fractures.

@teardrop
It’s not that doctors have to know too much…it’s they are required to know. Just an opinion but I would want to know, if you haven’t already, that there isn’t any secondary cause of your OP. The next step is addressing your bone building not just preservation of your existing bone although very important. You may not qualify for anabolic drugs like Tymlos for moderate to severe OP but some doctors (specifically specialists) are able to get them filled.
There are many patients on this forum that have far worse numbers. I’m not sure in your particular case why Prolia was prescribed….Age, severity of OP and your individual STATS.

@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.

@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.

@teardrop Just wanted to mention I was diagnosed in my early forties with osteoporosis, and the only cause they could determine was that I also had anorexia nervosa. I had it from age 17 into my 20’s, and had some degree of food and eating issues well after that. My lowest weight was 99 at 5’7”. I’ve had my parathyroid tested 3 times, tested for celiac twice, all of these have been normal every time.
If only I could go back and know what I was doing to my bones then.