Sorry, just a self-correction:

"Secondly, once on Prolia for around 5 years, there are significant risks of [atypical femur fractures] and osteonecrosis of the jaw... "

Hi formisc,

Thanks for the complement on the video. I worked for Intel for 20 years and gave a lot of PowerPoint presentations so making it was a lot of fun. And thanks for the response to my post. I think people learn the most from open discussion.

A comment on the Cleveland Clinic video with Dr. Chad Deal. He makes the comment that “so when denosumab is started, I always remind the patient that it’s forever” is absolutely not true and irresponsible based on experts like Dr. John Bilezikian, Dr. Michael McClung (whose study he references), Dr. Serge Ferrari, as well as the studies he references later in his own presentation. Those studies show a rebound effect that lasts for about a year and can be mitigated by taking either Alendronate or ReClast or both. Yes, you will lose about 5% or ½ T-score in that year period for long term denosumab users, but you can gain multiple T-scores being on denosumab. I show some of these studies in my presentation. And to be clear on some of the other points he makes about fractures after stopping denosumab, those are only prevalent is you do not follow with a bisphosphonate. I show some of that in my presentation with details I did not talk to in the backup.

From the trainings I have attended, antiresorptive risk of ONJ or atypical fractures is well below the risk of a major osteoporotic fracture of not taking them, even long term. I have not heard one doctor argue against this point.

I have no idea on insurance coverage of Prolia but I could see that as an issue. If you stop Prolia too early, you are not left with many options to maintain your bone density for the rest of your life.

Prolia has its place, and in my mind, is almost never the first treatment for osteoporosis. But for some people, like myself, Evenity did not get me to a point that a bisphosphonate would get me out of the osteoporosis range. Prolia is the only option left and I will be on it for 10+ years to get there.

Like you, I’m not a doctor. That said, I’m an engineer looking at a whole bunch of data. And agree, I too am just providing my viewpoint so others can work with their doctor for the best treatment plan for them.

Hello, I stumbled upon this post because I am extremely interested in how to get off Prolia or transition to another drug, as everything I have been reading is pointing me to catch 22 situation, in which I cannot go off Prolia and I cannot safely stay on this drug. I never was advised prior to starting on Prolia about risks involving extensive dental work, and when I went on it 6 years ago I had 19 crowns, one bridge and three root canals, with possible extractions in my future. Yet I was put on Prolia, and it wasn't until about 2 years later that I realized the trouble I was in, as my bridge broke and I had to have it replaced. About a year ago the tooth that anchored the bridge broke completely, so I had to have an extraction and a bone graft. I worked with my bone health specialist to try to accurately time getting two implants installed, but two weeks after they were installed, the bone around one of the implants started to erode and I exhibited the beginning signs of ONJ, so my oral surgeon opted to remove both of them to be safe. I got caught in-between the recommendations of the oral surgeon and the bone house specialist, in terms of when it was safe to have the dental work done, and against my oral surgeons recommendations, I went ahead and had my my last Prolia shot in June and the dental work done in October. Since then I've
learned that I should have waited one more month (5 months out) at least before having the dental work done. I'm now back at square one waiting... I should preface all this information by explaining I don't have my T-scores, but I started at -3.0 at least, and have made some improvements. I'm in the negative 2s now. Also, I have never had one break in my life and I have fallen multiple times before and after starting Prolia... on my wrists, ankles, knees... all kinds of problems and never had a fracture. I also have severe osteoarthritis and I have been told that arthritis of the lower back can skew bone density test scores, so I wonder if my osteoporosis is as severe as test scores indicate. I also strongly believe that as a result of taking Prolia I have many side effects, including higher bad cholesterol, the beginnings of high blood pressure, incredibly painful lower back pain, and excruciating bone aches that are unexplainable. I desperately want off this medicine, but I don't know what to transition to and am basically afraid of all my options. Reclast is out because of the ONJ potential, and the bisphosphonate option, HRT, also sounds bad, in terms of side effects. I'm currently waiting to see an endocrinologist and a rheumatologist to sort through this dilemma and figure out the best options for transitioning off Prolia. I'm also due for my next Prolia shot the end of December, but I don't see any of these doctors until January/ February time frame. I'm not sure if I'm going to have to finish one more Prolia shot, but I need to find a way out of this rabbit hole so that I can get my dental work done and eventually get off Prolia for good. Besides, how many more years can I take it safely?