Prolia treatment for osteoporosis: What is your experience?

"In cancer patients exposed to denosumab, the risk of ONJ varies from 0.7 to 1.9% (70 to 90 cases per 10,000 patients) and they have been reported to have a risk of developing ONJ similar to that of acid zoledronic (10).

In patients with osteoporosis treated with denosumab, the incidence of ONJ is lower, resulting in an even lower frequency of 0.04% (four cases per 10,000 patients)

However, the number of cancer and non-cancer patients treated with ONJ-related medications and, therefore, the number of potentially adverse events, seems to be constantly increasing (11)."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7462378/

UT Southwestern has a website about their BRONJ treatment. What was important to me, in addition to their comprehensive treatment specialty, was that they identify the stages of (rare) osteonecrosis and Stage 1 is where a patient has jaw ache or pain but no other symptoms. The important point is that this can injectable a very early stage and treated. For anyone taking anti-resorptive drugs, then, report any unusual jaw pain or ache or numb feeling to your doctor ASAP just in case. Especially if taking the higher-dose injectables.

@callalloo the two you mentioned were taking bisphosphonates for "well over 10 years." Are people taking bisphosphonates that long? This raises the issue of when to start a medication, since time might seem to run out if started too young. One year Evenity, two years anabolic, ten years total for Prolia and bisphosphonates, for instance, equals 13 years. So if one starts at 60, what happens at 73? I am curious if anyone's doc has discussed this, of if many are actually taking anti-resorptives for longer than 10 years.

I became aware of jaw necrosis as a possible side effect to osteoporosis medications some 20 years ago when I did my first dental implant. I was on Fosamax and stopped taking it - also because I had been on Fosamax for 5 years.
I told my Obgyn my concern and they put me on Evista which is a different type of drug. I did a second dental implant shortly after. Eventually I stopped Evista, Later, a new doctor said that I was in good health and could live a long time and strongly recommended Prolia to reduce risk for a fracture. Broken bones in the elderly are a very serious matter. I have been on Prolia some four years now. It is imperative to take good care of one's teeth when on osteoporosis medications - most of them mention potential jaw necrosis as a side effect, not just Prolia

I think there are a lot of people who've taken bisphosphonates for over a decade, especially people who started on Fosamax when it was first approved and just stayed on them because there were no known long-term effects for many years. And no alternatives beyond Boniva. At least that's my impression from what I've seen people mention, including some who've posted on Mayo Connect. Merck introduced Fosamax for older women and then sold bone-screening equipment to medical facilities to help generate sales of Fosamax. But then younger women started getting prescribed Fosamax and stayed on it for a long time if they tolerated it. The idea of planning a sequence of treatments, over time, is new, concurrent with newer choices from what I gather.

I understand the sequence that Amgen is suggesting of Evenity to build bone, then Prolia to "protect it" but can't understand why that would work if Prolia is an anti-resorptive drug. Does it not have the same risk of longitudinal fractures that the bisphosphonates have?

PS One study I came upon suggested that a possible reason for BRONJ is that the jaw bone sheds and replenishes bone cells faster than the major large bones of the body. Therefore the anti-resorptives mechanism of preventing the normal shedding of dead cells impacts the jaw bone differently.

PPS I don't understand why some of the osteoporosis drugs help the lumbar spine but not the femur/hip and others do the exact opposite. Or why bisphosphonates can cause longitudinal femur fractures for that matter. I've read a lot of studies but have yet to come upon an explanation for that unintended consequence.

Forteo has been around for quite a long time. I believe I tried to get on it 15 years ago. The FDA approved it in 2001, 20 years ago.

The problem is that primary care doctors think the biphosphonates are the "first line." They still do. They don't realize this is guided by insurance companies who want to avoid the expensive anabolics. Which may not work as well after all those years on anti-resorptives.

Amgen makes both Evenity and Prolia so it is no surprise they are suggesting that sequence. I am fortunate that my doc is using Reclast, possibly partial dose and possibly with breaks, with monitoring. Breaks are impossible with Prolia.

I haven't contacted the company yet (I am just considering the medication at this time), but if you go to the Prolia website, you can find out more information:
http://www.proliasupport.com/patient-overview. My insurance company will charge me a copay of at least $1000 per infusion.

It is true that even driving a car carries risks. However, people can control (usually) a car, can avoid accidents, etc. Once Prolia is in the body, you have no control at all. I'm currently research my options. T-score is -3.0 at the hip (if the DEXA is even accurate.) Sigh . . .

I am looking for any recent updates on treatment for the muscle and joint pain from Reclast ! I don't seem to be able to connect with a discussion about Reclast. Please direct me to the correct place.
Thank you