My doc - also at a teaching/research hospital has made me well aware to not stop. Did I indicate that I or anyone should stop taking it?
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I do think everyone needs to make their own decision regarding treatment for osteoporosis. It’s good to get as much info as possible. Where I a, in CT, we actually have an osteoporosis center…they lay out options and help you make an informed choice.
I’m having a bone density test done soon…and depending on the outcome, I’ll probably get a consult at that center.
My first test was done very shortly after menopause. 
there hasn’t been much if any change!
I’ve been on Prolia for 3-4 injections so far (after a couple of years of Boniva).
This year’s Dexa showed that my bone density has increased.
Mine is rx’d via oncology at Walter Reed. I was put on bone building drugs due to this research related to breast cancer.
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@abasket how long does your doc say you can stay on it and what will you do when time runs out? I know some have stayed on Prolia for 10 years. If a doc had started me, I would go off after 2-3 shots because rebound is gentler and transition to bisphosphonates more effective.
The thing is, going on Prolia leaves you in a bind because some drugs don’t work after Prolia (Tymlos and Forteo). Evenity is new but a possibility- research is needed.
Prolia is pretty effective but the rebound is a big problem.
@thumper1 I agree that everyone should make their own decisions but insurance companies are influencing what PCP’s and even some endocrinologists are doing. Many people need an anabolic and are instead getting an anti-resorptive that doesn’t build good bone and interferes with those that do.
Bone quality is as important as bone density.
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“I no longer take calcium daily because my numbers are high enough via my food intake. I take one maybe 3 times a week. It has a little D in it. I now take no additional D because actually my D was too high.”
Can you share your “target” and some hints how you get enough from food intake? I eat a fair amount of dairy and log food pretty carefully. Still MyNetDiary has warning like this each week.
I don’t worry to much because my morning multivitamin has 300mg Calcium an 25mcg (1000 IU, 125%) D3. More than half the evenings I remember to take my Calcium supplement - current choice has 400mg Calcium and 12.5mcg (500 IU, 63%) Vitamin . But these discussions have me pondering….
Suggestions can be here or this old thread HealthyHabits - Calcium sources (foods & supplements) - #72 by Colorado_mom
I’m not going to share any of my numbers because again, we are all individuals with different circumstances! I get blood work a couple times a year and my calcium has been higher than normal as well as the D - indicating that supplements not needed or reduced. My most recent blood test showed my calcium/D numbers to be more in the normal range - not as high as before (which was over norms)
People absorb nutrients differently. I eat a pretty well rounded diet. I don’t count calories I eat to nourish and be satisfied. I eat dairy (milk, cheese, whole milk/full plain yogurt, cottage cheese, green leafy vegetables, etc. I don’t eat an abundance of anything - just a variety of everything! I have no food allergies or limitations.
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I’m not a doctor, but given the uncertainty regarding the balance of benefits and risks of calcium supplements, if it were me, then I’d do my best to get the calcium you need from dietary sources.
Also, adding green leafy veggies and, of course, my personal favorite, weight-bearing exercises, like squats, stair climbing, lunges, etc., if able-bodied and your PCP is OK with it. 
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This thread is so helpful thanks for reviving. I’m going to check into the endocrinologist. I had a Dexa with osteopenia & just into osteoporosis range - my general practitioner wanted to put me on drugs right away. Something I definitely wanted to research (but haven’t dived in). Been lifting heavy weights for about 8 months.
A friend of mine has started a very expensive, online course on how to reverse osteoporosis with some recommended blood tests on bone quality. I’ll review and post some of that info…
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@abasket studies with Prolia are 3-4 years and one study for 8 years. What will you do afterwards? Dr. Ben Leder’s video on YouTube (Combinations and Sequencing…) has some good things to say about Prolia, and Prolia in combo with Forteo, but then he has to cover the follow-up.
Keith McCormick’s book “Great Bones” has a whole section on using the CTX bone marker blood test to safely time the transition from Prolia to Reclast. If you do it too early, the Reclast won’t work, and if you do it too late, there is risk of loss of density as well as fractures. The standard timing is 6 months and McCormick says it needs to be individualized. One of my doctors says it is fine to do 6 months. I don’t think they know definitely, to be honest.
Prolia basically makes the osteoclasts go dormant (the cells that tear bone down). When you stop they come back sort of turbocharged and without good follow-up fractures can happen fast. This is all according to my doctors and the sources I have mentioned.
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I’m going to be honest. I’m not going to respond to your questions because it’s clear over the years that you have very strong opinions on osteo treatment. Not interested in a debate. Not interested in oversharing medical info.
Happy to share my personal story (to a degree I’m comfortable with) but never am I going to try and sway someone here medically. Like any medical condition, there is an abundance of info, different treatments (thank goodness) for people to weigh what is the right one - if any -for them. Based on their personal body and situation.
Others here can glean what they like from the info provided - or walk by! 
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I don’t have strong personal opinions so much as 16 years experience, fractures, and years of reading and participating in forums. I posted some info that comes from those resources. For scores over -3.0 or even -3.3 there are so many options, including natural approaches. I have absolutely no opinion and tried alternatives myself.
For more severe scores, insurance is often an obstacle to proper treatment. Anti-resorptives are cheaper than bone-building anabolics and doctors have to do extensive work for authorization in many cases.
I certainly did not mean to offend. There is a lot of great info out there.
I hope @abasket that your doctor informed you about the dangers of getting off Prolia and that you have a good plan. Good luck!
As I mentioned above, my doc has spoken to me about not stopping Prolia - it’s talked about on each visit.
Moving on…
There are many forks in the osteo road. To me, none of them were great! But you will def find people who have had success with all the various forms of treatment - including the bisphosphates, Evenity, etc. And you will find people who had issues with all the forms of meds.
Even outside of meds, people have different results with treatment. Some can reverse or maintain scores with weight bearing exercise or diet or supplements. For some, none of that seems to make a difference - though you could argue that without those interventions, scores might be even worse.
It’s always the weirdest thing to me, this health issue. Because without a dexascan I would have never suspected - it’s silently there.
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At what age do most women get a dexascan?
@leftrightleft here is a good article on variables considered for a DEXA
Bone density test - Mayo Clinic
I had mine at age 50 but some without risk apparently get their first one at 65. Since there are no symptoms that would make me nervous!
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I’m a fine boned slim(er) white woman. The poster child for osteoporosis
My PCP recommended that they usually start at 65. I suspect that is because it’s the age of Medicare and Medicare will pay. I find that happens in my rural poor community.
I asked for her to prescribe it at 60 so I could get a baseline. My insurance paid and we had hit our OOP maximum. My insurance approved the scan and it was paid for.
I was found to have osteopenia, I have since had a follow up and my numbers have stayed the same. Of which I am happy with. No other treatment is recommended at this time.
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I had breast cancer in 2015. Some cancer patients take denosumab (Prolia/Xgeva) and some take zoledronic acid (Reclast/Zometa). My doctors wanted me on an aromatase inhibitor but due to other health issues would not prescribe either. I started with osteoporosis and it got a lot worse. I believe that the doctors were mistaken to be honest.
Back in 2015 they weren’t absolutely sure of the anti-cancer aspects of these meds and it seems now they are. Xgeva and Zometa are used for metastasis to bones.
Tymlos brought my bones back to precancer levels. I could not tolerate Evenity but pushed through for 4 months. Tomorrow I do a 20% dose of Reclast with IV hydration. I have had side effects that are difficult for 10 years.
I actually tried for years to get on meds. I could not tolerate Fosamax or Forteo, which were the meds available for much of that time (2006-2021). I saw an immunologist to try to get on Forteo and applied for a study for the Tymlos patch but was rejected due to one dose of Fosamax in 2006. With an inability to get on meds, I read as much as I could about holistic approaches but they are no match for loss of estrogen for many of us post-menopause and certainly not for those of us who have to or had to take aromatase inhibitors which eliminate estrogen in the body.
The only way I have gotten onto any treatment is by adjusting doses. My first dose of Tymlos landed me in the ER due to another health issue that was aggravated. I started again a few months later, with no alternative, and ramping up from low dose to almost full dose worked. I tried the same approach with Evenity (one shot vs two) and it didn’t help side effects. We’ll see what a 20% of Reclast dose does to my kidneys and heart.
I take medications very seriously and am very cognizant of the fact that once you get on that train, it can be hard to get off (Prolia isn’t the only one but I have been told it is the hardest to stop). All the other drugs require follow-up with Reclast (or sometimes Fosamax) and if we cannot tolerate those, what are we to do?
I also take fractures very seriously. I live alone and when I fractured 3 lumbar vertebrae with one unwise movement (not a fall) I was crawling on the floor in pain, could not do laundry, cook, grocery shop- and had no help until my daughter came up and she could not stay long. Very scary. The impact is forever: these fractures stabilize but don’t actually “heal.” The structural changes cause GI and breathing issues and aggravate afib. Having had fractures is the only reason I post on osteoporosis at all. I feel my history involves a lot of mistakes of doctors and of my own (of course I resisted meds too, hoped that small frame explained my DEXA, hoped that quality was good if density wasn’t, hoped that diet and exercise would help, hoped that dealing with inflammation would help- but all in the context of not being able to tolerate treatments).
I am grateful to have a doctor who fully informs me on risks, and works with me on flexible approaches given my intolerance of meds and other health issues. I won’t post again here but wish everyone luck. We need more research and better insurance coverage.
ps I use the word “tolerate” to mean literally not able to endure. Many of us are willing to endure significant side effects to avoid fractures. None of these drugs have been “tolerable” in the usual sense of the word, for me. That said, many people have no side effects at all on many of the medications. Including posters here.
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Talk about doctors reminds me that my PCP (who knows of my mother’s osteoporosis) did at one point prescribe a few months of super high weekly dose of Vitamin D (I think D2?).
My first DEXA scan was Dec 2021, age 59. Results normal (lumbar spine, bilateral hip, femoral hip). Recommendation was to repeat in 3 years, also include L1-L4 and the left hip.
My husband and I have this PCP for 30 years, really like and trust him. Alas, he will be retiring at the end of the month. I would have valued his input about the new possible concerns for too much calcium supplement.
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oops - duplicate
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For better or worse the endocrinologists around here seem to have a 3 month backlog so my PCP suggested she’ll start me on a biophosonate, we’ll see if I tolerate it but we can switch to something else once I get an appointment with an expert. Now I can move on and worry about various other things a recent body scan turned up!
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