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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@debbiem

A good thing to remember is that we rebuild our bones every 10 years (I've even read on some ortho sites that its every 7 years). And we continue to do that until we die....So....we just need to be conscious of what we're putting in our mouth that helps bone growth, what hinders it, be sure to stay hydrated, and exercise. As a bone doctor told me a few years ago when I was sent to him for a -3.4 score, it depends on heredity, diet, bone architecture, bone strength, etc not just on a DEXA score which actually doesn't measure TRUE density (mass per unit of volume), but measures AREA density (mass per unit of area). Plus, he told me that my bone loss was most likely due to all the prednisone I had been on for many years....which, if I got off of I could probably speed up bone growth fairly quickly.

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Bone remodeling goes on throughout our life. However by the age of 30, and its younger for women we have achieved our peak bone density. After that the breaking done of bone when we are older occurs at a faster rate than the building up or filling in of the new bone. Consider yourself lucky if you are big-boned to start with because we all lose some bone as we age. If you have children or grandchildren encourage them to eat a calcium rich and protein rich diet and to exercise so that they can start out with the strongest skeleton possible. It's like putting money away for a rainy day.

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The only drug that actually builds new bone is Forteo, which is a daily injection. There is a new drug just coming on the market, but I don't know anything about it. If you experience side effects with Forteo you can just stop, where Prolia is in your system for at least six months. As I understand the way Prolia works, it stops the natural breakdown of old bone, and suppresses the immune system to do so, allowing you to hold onto old bone that shows up on the dexa as increased bone density. I stopped Prolia after three injections, due both to the many side effects that greatly impacted my quality of life and learning the facts about how it works. There is the risk of rebound fractures when stopping Prolia. I did not go on a relay drug after my last Prolia injection in June of 2018, and have not experienced any fractures. I strongly advise doing your own research before starting any of these drugs. I caved to pressure and fear mongering and started Prolia without doing enough research myself.

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In addition to bone density, there is bone strength which the Dexa scan does not measure.

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@mabel343

The only drug that actually builds new bone is Forteo, which is a daily injection. There is a new drug just coming on the market, but I don't know anything about it. If you experience side effects with Forteo you can just stop, where Prolia is in your system for at least six months. As I understand the way Prolia works, it stops the natural breakdown of old bone, and suppresses the immune system to do so, allowing you to hold onto old bone that shows up on the dexa as increased bone density. I stopped Prolia after three injections, due both to the many side effects that greatly impacted my quality of life and learning the facts about how it works. There is the risk of rebound fractures when stopping Prolia. I did not go on a relay drug after my last Prolia injection in June of 2018, and have not experienced any fractures. I strongly advise doing your own research before starting any of these drugs. I caved to pressure and fear mongering and started Prolia without doing enough research myself.

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@mabel343 you seem to have beat the odds re the risk of rebound vertebral fractures. I wish to discontinue and have heard from others who had the opposite experience months later. Dont know if I'll be able to say "no" to the Reclast (Aclasta) infusion which will do who knows what to my system.
Forteo, even if you dont have side effects, is a bit concerning because of that bone cancer warning (which is why you cant stay on it longer than 18mos).

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Unfortunately, none of the drugs available to those of us with osteoporosis are optimal.

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@mabel343

The only drug that actually builds new bone is Forteo, which is a daily injection. There is a new drug just coming on the market, but I don't know anything about it. If you experience side effects with Forteo you can just stop, where Prolia is in your system for at least six months. As I understand the way Prolia works, it stops the natural breakdown of old bone, and suppresses the immune system to do so, allowing you to hold onto old bone that shows up on the dexa as increased bone density. I stopped Prolia after three injections, due both to the many side effects that greatly impacted my quality of life and learning the facts about how it works. There is the risk of rebound fractures when stopping Prolia. I did not go on a relay drug after my last Prolia injection in June of 2018, and have not experienced any fractures. I strongly advise doing your own research before starting any of these drugs. I caved to pressure and fear mongering and started Prolia without doing enough research myself.

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Mabel343... I so agree with you not to cave in to the pressure and start the shots & drugs...Yes do your research!!! Just visit Osteostrong
and see the scientific research done!. Also you can find locations nearest to you.

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@debbiem

A good thing to remember is that we rebuild our bones every 10 years (I've even read on some ortho sites that its every 7 years). And we continue to do that until we die....So....we just need to be conscious of what we're putting in our mouth that helps bone growth, what hinders it, be sure to stay hydrated, and exercise. As a bone doctor told me a few years ago when I was sent to him for a -3.4 score, it depends on heredity, diet, bone architecture, bone strength, etc not just on a DEXA score which actually doesn't measure TRUE density (mass per unit of volume), but measures AREA density (mass per unit of area). Plus, he told me that my bone loss was most likely due to all the prednisone I had been on for many years....which, if I got off of I could probably speed up bone growth fairly quickly.

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Some good points made to know and to remember....thank you.

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@mabel343

The only drug that actually builds new bone is Forteo, which is a daily injection. There is a new drug just coming on the market, but I don't know anything about it. If you experience side effects with Forteo you can just stop, where Prolia is in your system for at least six months. As I understand the way Prolia works, it stops the natural breakdown of old bone, and suppresses the immune system to do so, allowing you to hold onto old bone that shows up on the dexa as increased bone density. I stopped Prolia after three injections, due both to the many side effects that greatly impacted my quality of life and learning the facts about how it works. There is the risk of rebound fractures when stopping Prolia. I did not go on a relay drug after my last Prolia injection in June of 2018, and have not experienced any fractures. I strongly advise doing your own research before starting any of these drugs. I caved to pressure and fear mongering and started Prolia without doing enough research myself.

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Just remember that Forteo is a synthetic parathyroid hormone. Synthetic PTH can cause Alzheimers. It increases bone growth temporarily...but you will lose any benefits within 4 weeks of quitting it....that's why most doctors put patients on prolia or another drug after coming off Forteo. It causes erosion of the GI tract, can cause bone cancer (black box warning on the drug info sheet). Forteo also increases calcium in the blood which can actually weaken bone strength. It also decreases magnesium. 60% of magnesium is found in our bones. It also increases cortisol, which blocks calcium absorption and decreases bone cell growth. These stats are what helped me make the decision to NOT take it. Instead....I take boron, Vita D, Vita K2, omegas, Vita C, among other supplements, stay super hydrated with water, do OsteoStrong, and walk/take stairs every chance I get.

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@debbiem beginning to think that the risks of all these osteoporosis drugs outweigh the so-called benefits.
You're right. Originally my doctor wanted me on Forteo for 18mos followed by Prolia.
All this bone building that then has the potential to disappear it's like an illusion. And then almost all the drugs have the ability to also break your bones. It's very weird.

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