About to start Prolia: What's your experience?

@callalloo as you know, Prolia is not a bisphosphonate. As I have written, my doc wants me to try a partial dose of Reclast, which is a biphosphonate, and will monitor to see if I can take breaks. Breaks are not possible with Prolia.

I foresee years of going on and off bone builders as needed, maintenance with Reclast, hopefully at low dose, and hopefully breaks during which I would emphasize "whole body" approaches.

I'm sorry if I gave the impression that I was directing that question to your, or your specific doctor's, plan.

Rather I wondered how, in general, people who do grow bone with non-bisphosphinates, protect against the anti-resorptive risks of bisphosphonate drugs, or Prolia, when later put on them to protect that new bone as I'd not found any answer to that anywhere. Your plan makes sense. I'm hoping that, by the time you're seguing off Tymlos, there are myriad ways to also increase bone strength and fight fracture risk with a new approach as well.

You did not give the impression that you were directing your question at my plan. I just gave my doc's plan as an example. I will probably come off Tymlos in two months so don't have hopes for a better plan 🙂 I am okay with things as they are. Some people even go off Reclast for a few years after locking gains in. It all depends on monitoring.

@joan26 the company itself, Amgen, has a list of side effects on their site https://www.prolia.com/how-prolia-works/how-prolia-works?PPC-accountype:MICROSOFT-campaign:BND_DTC_Decision_General_2021-searchterm:prolia+info-adgroup:Consideration_General_PHM-keywordid:p71881835869&gclid=64a5684744f018afcb720aa11fb637fe&gclsrc=3p.ds&&gclid=64a5684744f018afcb720aa11fb637fe

Most drugs will have a longish list of possible side effects, and many reactions will be reported. Prolia has helped some patients, but others have suffered side effects. I would talk to your doctor.

The hardest thing about Prolia is that when you stop or even skip doses, your fracture risk goes up unless you are on something else. My doc does not use it.

@callalloo what do you mean by "bisphosphonate analog"? I have never heard that term. Prolia is a monoclonal antibody that stops production of cells that cause bone loss.

I am on my 10th dose out of 12 of Evenity. I don't tolerate bisphosphonates and won't take Prolia because of the side effects. Since I was started on Evenity, Tymlos and Forteo are not options. I believe that diet, exercise and supplements are not enough for me to maintain bone density and avoid further fractures. My plan is to begin Evista (raloxifene) which is a SERM (Selective Estrogen Receptor Modulator). It has its own significant side effects. I believe this is the best path for me.

That’s a very good question. I am just starting Forteo and was told in 2 years I will have to go on something to maintain any bone growth. The choices aren’t great.

Well, there does seem to be an element of kicking the can down the road. How can one prevent the very well-known side effects of the anti-resorptives (bisphosphonates and Prolia) of odd fractures and osteonecrosis (no matter how 'rare') when taking them after growing bone with other drugs if the anti-resorptives are the only drugs to 'protect' that 'new bone'?

What's needed is an anti-resorptive approach or people can potentially get into a messy cycle as far as I can see. I was looking at a video on sound/vibration being used to kill cancer cells in lab experiments and the professor explaining this mentioned a facility in Toronto having good results with vibratory medicine to increase bone density. That might not pan out or become widely available but something that helps maintain the bone renewal cycle is the solution I'm hoping for.

The good news is that a lot of new developments are possible in 2 years including finding that taking Forteo for a longer period is fine, or for longer on a smaller dose. Or the current emphasis on bone strength will yield a whole new way of ensuring real bone integrity. If one has very little estrogen by that time, then loss of estrogen is no longer a factor to trigger bone renewal falloff so, just maybe, they're find there is less need to 'protect' the new bone anyway. So there are a lot of other possible solutions and two years is a long time in the arena of medical advancements.

I am being advised to start Reclast or zoledronic acid via infusion once a year to treat osteoporosis (left neck area) and Ostopenia ( 5 or 6 other areas based on bone density test result). I’m concerned about risks and side effects. Any comments would be helpful.

I can't find where I used the term "bisphosphonate analog" and know Prolia isn't an analog so suspect that it's an auto-correct error.

But Prolia is an anti-resorptive drug so shares that mechanism with bisphosphonates. That's likely what I was referring to with respect to using any of them as 'protection drugs.