Prolia treatment for osteoporosis: What is your experience?

You need to weigh the risks against the benefits. I'm on prolia and will be for life but I would rather do that and have a decent life then break bones like my hip or spine and be in a wheelchair. Just my thoughts.

Hi, Windyshores. Thank you for your reply. Actually my Tscores indicate osteopenia - not osteoporosis. And in the last several DEXA scans, there have been slight improvements. But now I'm on prednisone for PMR, so things can change. I've been having DEXAs every 2 years for a very long time. and my next one is due this December. I've been on the pred since Sept. 2021. So it will be interesting to see what the changes will be this time. I think that's when I'll have to make some serious decisions.

Hi, Windyshores. Thank you for your reply. Actually my Tscores indicate osteopenia - not osteoporosis. And in the last several DEXA scans, there have been slight improvements. But now I'm on prednisone for PMR, so things can change. I've been having DEXAs every 2 years for a very long time. and my next one is due this December. I've been on the pred since Sept. 2021. So it will be interesting to see what the changes will be this time. I think that's when I'll have to make some serious decisions.

You need to weigh the risks against the benefits. I'm on prolia and will be for life but I would rather do that and have a decent life then break bones like my hip or spine and be in a wheelchair. Just my thoughts.

If you google "aspirin not effective against clots afib" there are many entries. Here are just two:

Aspirin monotherapy, or using aspirin by itself, was previously an option to prevent unwanted blood clots for patients with atrial fibrillation. However, further studies have shown that aspirin alone is not effective in reducing the risk of disabling stroke and it is no longer recommended. https://drafib.com/blog/blood-thinners-for-afib#:~:text=Aspirin%20monotherapy%2C%20or%20using%20aspirin%20by%20itself%2C%20was,disabling%20stroke%20and%20it%20is%20no%20longer%20recommended.

About 40 percent of "a-fib" patients deemed at moderate to severe risk of stroke because of age or other conditions are prescribed aspirin alone rather than recommended blood thinners such as Xarelto (rivaroxaban) or warfarin, according to a new study...

Another heart specialist agreed. "Aspirin is not an anticoagulant and is not effective in preventing strokes in patients with atrial fibrillation," said Dr. Samuel Wann, a cardiologist at Columbia St. Mary's Hospital in Milwaukee. Wann is co-author of an editorial published with the study.
https://www.webmd.com/heart-disease/atrial-fibrillation/news/20160620/aspirin-often-wrongly-prescribed-for-atrial-fibrillation

My post to @aspine seems to be in the wrong place! Too late to edit! Not sure how that happened. I replied via an email link.

Actually you can only take Evenity for one year. Amgen makes both Evenity and Prolia so they also suggest Prolia AFTER Evenity.

You can also take a biphosphonate, Tymlos or Forteo after Prolia but yes, you cannot just stop Prolia, from what I have read and heard from docs. There can be an abrupt drop in bone density.

We don't know your DEXA scores. If your osteoporosis is not severe, I hope that your plan to rely on calcium, D3, K2 and weight-bearing exercise works well! If your osteoporosis is severe, I hope you can find a med that you can tolerate and find effective.

@danboys I think there is concern that risks of atypical fractures and osteonecrosis of the jaw if you use Prolia for years. This is because it suppresses turnover. Apparently it hasn't yet been studied past 10 years but I noted this article did mention taking it "for life."

I really like the info on melioguide.com, run by Margaret Martin, who also provides info on exercises on her site.
https://melioguide.com/osteoporosis-treatment/how-long-can-you-take-prolia/#respond#:~:text=How%20Long%20Can%20You%20Take%20Prolia.%20There%20is,have%20clinical%20studies%20that%20go%20beyond%20ten%20years.
"Key Takeaways on Prolia
Here is an executive summary of the key points made in this Prolia article.
Consult with your physician when and if you should take Prolia injections. Have a conversation with your physician about Prolia. You can use the talking points listed the section below entitled, Prolia and Your Doctor.
A key question patients struggle with is how long can you take Prolia? If you start Prolia injections, you should plan on being on the treatment for life. Discontinuing Prolia usage (without going onto another pharmaceutical to maintain the gains you made) could have serious, irreversible side effects. These side effects include multiple vertebral compression fractures and a lowering of your bone mineral density.
You should work with your physician on an exit plan if you decide to stop using Prolia. Keep in mind that the medical community is still working on the most appropriate and safe way to discontinue Prolia. I discuss these in detail in this article.
If you are at a high risk of osteoporosis fracture and your physician advises Prolia injections, you should consider following her or his advice.
Prolia need not be the treatment of choice if your diagnosis places you in a low or moderate fracture risk category. The right combination of exercise and good nutrition can help you to stay (or move you into) the low risk fracture risk category. With the support of your physician, you should try to delay Prolia injections.
Prolia injection side effects can happen. However, both Dr. Adachi and Amgen state that serious side effects are rare. Dr. Adachi’s experience is that most side effects last a short time (less than 3 months), and many Prolia side effects can be treated and reversed."

I had absolutely no side effects from Prolia until almost exactly two months after the shot when I began to experience intense pain and other signs of infection around three dental implants in my lower jaw. An oral surgeon removed the implants, but the pain only increased and bone was exposed. I was diagnosed with MRONJ and advised against further Prolia treatment. Fortunately, the jaw finally healed after discontinuation of Prolia and several months of antibiotic treatment along with dental rinses.

Thank you for your post !
I also had severe side effects of severe joint, muscle and bone pain 6 weeks after my second injection of Prolia. My doctors said that the symptoms I was having were not related to the Prolia. Prolia was the only thing that was introduced to me during this period and I felt the side effects had to be related. I know everyone reacts differently but it certainly helps to know ( even though I am so very sorry that you had all of the problems that you had) that I am not alone and what I felt was a real cause and effect.
Thank you