Prolia adverse events over 10 years - ONJ, AFF

Hi @gma415 - This topic comes up a lot at trainings I go to. Dr. Michael McClung compares Prolia to other drugs like cholesterol drugs, or blood pressure medication. Trials for those drugs typically run for two years or less, but people take them for the rest of their lives. Just because the trial data stopped at 10 years, does not mean you need to stop taking it. He also points out that the risk of adverse events throughout those ten years of trial data does not get worse so there is no indication that you need to stop. He just made this point again two weeks ago at the Santa Fe Bone Symposium and no one in the room full of doctors disagreed.

THANK YOU! Now to see if the doctor and insurance agree. Hugely expensive to self pay but thinking it would be worth it!

@gently I am curious now I am on Forteo but because I have kidney problems, graves disease and auto immune and I am worried about jaw necrosis. they want me on Prolia or reclast. I heard prolia is better for kidneys and recast is not but I people stating Prolia is good. I need to make a decision soon

@michaellavacot I don't know where to turn my doctor constantly wants me on reclast knowing that have kidney stones a lot and graves disease (autoimmune) plus I am scared of jaw necrosis. evinity has risks of blood clot, heart attacks and strokes. I do not know where to turn right now I am on Forteo injections.But I don't think my doctor is looking into my health problems and it is hard to find one up in Northeast PA as it is .

@vmcgrantham - Just because you have kidney stones does not necessarily mean Reclast or any other osteoporosis drug is contraindicated. Now if you have a low GFR, that's another story. I have kidney stones but they have yet to shake loose, which I hope they never do. As far as which drug you should choose after Forteo, it depends on your T-Scores at the end of your treatment. Get a DXA scan in the last month or two before the end of Forteo and then make the decision. Prolia might be in order, maybe Reclast or Fosamax, or maybe Evenity if you are still deep into osteoporosis. Once you know, then you can work through the risks for each versus the benefits of each. There are a lot of factors to consider.

I recommend you watch a training I put together on osteoporosis treatments and medications, especially part two https://www.youtube.com/@michaellavacot . But remember, I'm not a doctor and I only offer this information as additional information for you to work with your doctor. I do my best to gather the latest information but I'm sure I make mistakes.

Maybe going beyond just Prolea. Mum has had the lot. The bisphosphonates on and off for years, the teraparatide injections, and now Prolea for a number of years. A prior femur fracture repair gave way last year. I speculated as to whether her bones needed a little breather. She now has severe osteoporosis. So many fractures over the years.

@dezzie If you have had a fracture while on Prolia, that can happen. Prolia reduces the risk of fracture but does not eliminate the risk. If you wanted to try something, what I have heard doctors doing is adding a round of Forteo to the existing Prolia treatment. YOU DO NOT WANT TO STOP PROLIA to try Forteo. Stopping Prolia is really tricky. I have a training just on Prolia that should consider watching since your mom is on Prolia.

I waited for an appointment with the most sought after osteoperosis specialist in my area for one and a half years. When the appointment time came around I received a phone message she was leaving the area and retiring. I made the appointment in the first place because I started on Anastrozole at the time and got osteoperosis numbers in spine and radius. I went on Prolia and have received 2 injections. In a couple weeks I am due for injection 3. I wanted to see the specialist to see if I was doing the right thing with the Prolia. I figured if she changed treatment is was soon enough to stop the Prolia. This week's Dexa scan shows a slight change in spine that is probably so small that it is essentially no change. They didn't have a score for the radius. Hip and Femur remained the same as osteopenia, again, no change. I am truly considering not doing the prolia and also stopping anastrozole. I have been on that for 3 years. Joint pain is bad enough during the summer and now I am looking forward to winter where it is really painful. My oncologist didn't even want to order this last Dexa because she said there would be no change. I checked with my endocrinologist who sees me for Graves and when I asked him about osteoperosis he said he only treats Graves. So, long journey around to end up nowhere. Seems like the world of oncology doesn't change.

Hi @phonso - Your condition is out of my area of study so I don't think I'm going to be much help here. From what I understand, Anastrozole blocks estrogen which would in turn increase the osteoclast activity. Since Prolia REALLY slows down the osteoclasts, I would think it's a good thing.

With the errors and variability of DEXA scans, I'm not surprised that you did not see a difference in less than two years. I would say give it some time, but again, this is out of scope for me. I don't recommend you just stop anything without consulting your doctor. We patients tend to get ourselves in trouble by playing doctor, but it's good to study and be part of the decision process.

I wish I could be more help. Good luck!

Yes, thanks. If I remember right when I decided to start the Prolia and had all the options of even starting a medication it seems I decided on Prolia just because of the unique issue of having to supress estrogen and deal with bone issues. I went from osteopenia to perosis in just 2 years. I know age is very much an issue, but the thought of a spine or hip fracture was as scary as the cancer diagnosis was. Therefore I asked my oncologist to get me on something for my bones and she, at first, didn't act as if I needed something with my numbers which were clearly osteoperosis in the spine and radius. However she did give me all the options and it seemed that the action of Prolia was best suited for my situation. Then, I started second guessing myself when I read about the jaw necrosis thing and that is why I was caught between side effects of Prolia and truly experiencing the side effects of Anastrozole and jaw necrosis I was ready to throw up my hands and give up. The study you showed that showed the very rare occasions over 10 years of the Prolia helped immensely so I will be staying on both of the medications as well as maintaining my Vit. D and Calcium supplements. Thanks very much for that. I would also include the fact that I work hard at exercise to keep proper stress on these bones such as my walking routine several times a week. I tried rucking to help my back also.