Prolia treatment for osteoporosis: What is your experience?

Posted by Veruska @veriska, Mar 7, 2017

I received the results from my bone test and they have recommended I start Prolia. I have read the side effects and I am concerned. Has anyone use this drug and if so what side effects have you experienced. Thank you

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I am trying the fosamax as the rhematologist wants me to but when i get my next dexa scan and if I don't improve i am going to ask her about going back on Forteo

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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.

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@renay110

I am trying the fosamax as the rhematologist wants me to but when i get my next dexa scan and if I don't improve i am going to ask her about going back on Forteo

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That sounds like a good plan. I think my doc may do a biphosphonate for me after one year of Tymlos, monitor, then put me back on Tymlos as needed- depending on scans. So alternating may be good practice!

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I just started Prolia. So far I have had no side effects at our all.

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My Rheumy wants me to go on Prolia also. But I've been doing a lot of digging about this drug. Apparently once you get on it, you're stuck on medication for life. Because the minute you stop the Prolia, your bones begins to disintegrate. So then the plan was to give you a different drug (I think it was (is) Evenity) to pick up where Prolia leaves off. And you have to stay on that or something else forever. I'm no expert, so I recommend you do your own research with reliable sources to find out more about these drugs. They ALL seem to have their problems. Many people have had good success with taking Calcium, Vitamin D3 and Vit. K2, and weight bearing exercise. Me personally, I've decided not to go with the Prolia.

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@aspine

My Rheumy wants me to go on Prolia also. But I've been doing a lot of digging about this drug. Apparently once you get on it, you're stuck on medication for life. Because the minute you stop the Prolia, your bones begins to disintegrate. So then the plan was to give you a different drug (I think it was (is) Evenity) to pick up where Prolia leaves off. And you have to stay on that or something else forever. I'm no expert, so I recommend you do your own research with reliable sources to find out more about these drugs. They ALL seem to have their problems. Many people have had good success with taking Calcium, Vitamin D3 and Vit. K2, and weight bearing exercise. Me personally, I've decided not to go with the Prolia.

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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.

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@aspine

My Rheumy wants me to go on Prolia also. But I've been doing a lot of digging about this drug. Apparently once you get on it, you're stuck on medication for life. Because the minute you stop the Prolia, your bones begins to disintegrate. So then the plan was to give you a different drug (I think it was (is) Evenity) to pick up where Prolia leaves off. And you have to stay on that or something else forever. I'm no expert, so I recommend you do your own research with reliable sources to find out more about these drugs. They ALL seem to have their problems. Many people have had good success with taking Calcium, Vitamin D3 and Vit. K2, and weight bearing exercise. Me personally, I've decided not to go with the Prolia.

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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.

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I tried Prolia, with no side affects and it didnt help my bones, then I went on Evenity which was the same but now I am on Tymlos but am concerned it could be causing hair loss I'll know I guess at my next appointment

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Are people adding orthosilicic acid to their daily supplements for bones? I've seen two studies that say it's important in bone health so added Bio-Sil to my regiment just in case but wonder if someone knowledgeable has any opinions on its importance?

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@windyshores

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.

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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.

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