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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@helenrose

I fractured my left hip 4 months ago and I am healing well. My doctors want me to go on reclast and I am very conflicted. I have had osteoporosis due to early menopause since my late forties. I took forteo for 2 years in my fifties and that did help. I also have IBS, therefore reclast. I meet with an endocrinologist on Monday and I am sure she will say I should do reclast. I will ask her about prolia. I had no side effects with forteo.

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You can now do Forteo for more than two years in your lifetime, because noone developed bone cancer (the drug has been around long enough to lift the black box warning). Another option is Evenity. With a hip fracture I would think you would use something that grows bone versus reclast or prolia.

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@renay110

Did your dexa scan numbers get better since you are on prolia

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In reply to @renay110… my scores have improved significantly to the point that I have moved into the osteopenia range instead of osteoporosis range over the past few years.

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I have used Prolia for 3 years and have had no side effects. In fact my dexa scan numbers have shown improvement. I’m planning to meet with my dr for a review of Prolia numbers to understand the overall results. Since I’ve had a hip replacement the dexa scan numbers are from my spine only. It does get a bit confusing tracking results.

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@migizii

In reply to @renay110… my scores have improved significantly to the point that I have moved into the osteopenia range instead of osteoporosis range over the past few years.

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Thank you. I received my first shot in October.

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@ams

I don't know if I will continue with Prolia. I have a molar that needs pulling and the oral surgeon will not touch it until 6 months has passed with my last injection. That will be April 7th. My hair is falling out a lot more than before Prolia. I have only had 2 injections, so I am not going to worry if I stop.

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I take Prolia. In September, my dentist advised me to have a molar extracted. I had to wait until the end of January until the six months of being on the Prolia injection were up. It is two weeks and two days later and the socket is healing well. My next injection will be at the end of this month. To wait 7 months btwn injections is safe accdg to endocrinologist.

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@helenrose

OK. One of the things to be aware of is that reclast kills the bone growing cells and puts in a different kind of bone that can be more brittle.

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Just had my molar pulled. On Prolia. Oral surgeon said while extracting this molar, that Prolia also changes the texture of the bone. More rigid less flexible.

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@windyshores

I replied on the Evenity thread (and should have replied here). It is difficult to respond though without knowing your DEXA scores and whether you have fractured. With LCIS, and DEXA's that aren't too severe, raloxifene might be a good choice, as your doctor said. Tymlos can be taken at a low dose and then ramped up. Reclast is also used for cancer patients as well as for osteoporosis. They all have side effects listed. There is no way to know in advance how your body will react. Often starting at a low dose (this can be done with Reclast as well) and working up can be a good approach. After Tymlos my doc is going to try 1/4 dose Reclast administered slowly with meds beforehand, because I am sensitive.

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is it possible to start with a low dose of prolia and then gradually increase? Or is it possible to take a lower dose at shorter intervals?

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@marcd

is it possible to start with a low dose of prolia and then gradually increase? Or is it possible to take a lower dose at shorter intervals?

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I don't know! Good question. My doc has said I can try 1/4 dose Reclast after my Tymlos and during my cancer treatment, before Tymlos, the docs were also talking about a smaller dose of Reclast. But I don't know about dosing Prolia, sorry! Tymlos is daily so ramping up is done over days or maybe two weeks. But Prolia is so infrequent I am not sure how ramping up could be possible. So the question really is whether a lower dose injection would be allowed and of benefit.

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@windyshores

I don't know! Good question. My doc has said I can try 1/4 dose Reclast after my Tymlos and during my cancer treatment, before Tymlos, the docs were also talking about a smaller dose of Reclast. But I don't know about dosing Prolia, sorry! Tymlos is daily so ramping up is done over days or maybe two weeks. But Prolia is so infrequent I am not sure how ramping up could be possible. So the question really is whether a lower dose injection would be allowed and of benefit.

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Thanks windyshores! I see so many posts describing bad experience with Prolia -- therefore I am concerned. However, it has been pointed out that people with a bad experience are more likely to post as compared to people with no side effects. Do you know -- or does anyone know -- how to get an overview of the chances of side effects? or how to get information on who is most likely to experience negative side effects? or how to find suggestions for things to do to reduce side effects? Thanks to you and everyone else for thoughts on this.

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@marcd

is it possible to start with a low dose of prolia and then gradually increase? Or is it possible to take a lower dose at shorter intervals?

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I asked the same questions after my pain and hair loss with Prolia and my endocrinologist said, "no"!

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