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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@renay110

I got my 1st prolia shot in October

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How did it go for you in terms of side effects?

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@marcd

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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The main issue with Prolia seems to be that you can't get off meds after starting it. When you stop Prolia there is a relatively quick, steep drop in bone density, according to what I have read and what my doc says. Most only take Prolia for 5 years and then what do you take? Both Prolia and Reclast/Fosamax suppress bone turnover resulting in brittle bones over 5-10 years. So going on Reclast after Prolia doesn't seem great either. This scenario AFTER Prolia is the real problem with it. (Reclast stays in your system for a long time after you stop so doesn't have the quick drop off in bone density.) My endocrinologist will not put me on Prolia, ever.

As to side effects, those lists of side effects and negative comments can be scary but the company is legally required to disclose every possible side effect. All I can say is that I have a friend who was on it for 5 years with no side effects. Of course, people like her don't post!

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@marcd

How did it go for you in terms of side effects?

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So happy there was No side effects with my first shot

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I have been on Prolia every 6 months for 2 years without any side effects or reactions after injections or in the weeks after. It’s a painless injection and not an infusion. I have been on other treatments that offered no improvement, but Prolia has provided slow increasing results.

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@windyshores

The main issue with Prolia seems to be that you can't get off meds after starting it. When you stop Prolia there is a relatively quick, steep drop in bone density, according to what I have read and what my doc says. Most only take Prolia for 5 years and then what do you take? Both Prolia and Reclast/Fosamax suppress bone turnover resulting in brittle bones over 5-10 years. So going on Reclast after Prolia doesn't seem great either. This scenario AFTER Prolia is the real problem with it. (Reclast stays in your system for a long time after you stop so doesn't have the quick drop off in bone density.) My endocrinologist will not put me on Prolia, ever.

As to side effects, those lists of side effects and negative comments can be scary but the company is legally required to disclose every possible side effect. All I can say is that I have a friend who was on it for 5 years with no side effects. Of course, people like her don't post!

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Interesting info. Is it your understanding that you can stop reclast and it does not require being on it permanently? I am considering evenity and the options after are prolia and reclast. The doc says that prolia is by far a better drug..but I am no happy about the prospective of having to take it forever. Appreciate the insight.

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@sus34

Interesting info. Is it your understanding that you can stop reclast and it does not require being on it permanently? I am considering evenity and the options after are prolia and reclast. The doc says that prolia is by far a better drug..but I am no happy about the prospective of having to take it forever. Appreciate the insight.

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Don't rely on me. But I have been told Reclast lingers for awhile so the drop off is not as abrupt and both my MD and the chiro McCormick who wrote a book on osteoporosis said I could 1) try a low dose of Reclast and 2) go off from time to time- as long as my bones are monitored.

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@windyshores

Don't rely on me. But I have been told Reclast lingers for awhile so the drop off is not as abrupt and both my MD and the chiro McCormick who wrote a book on osteoporosis said I could 1) try a low dose of Reclast and 2) go off from time to time- as long as my bones are monitored.

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Thanks…yes I have also been told reclast lingers longer…18 months rather than the year originally though to be the time span. Makes sense that it would not be a drastic dip in coverage from that regard.

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@migizi just to let others know, this is the only connect message to come through in a few days and am not being successful in figuring out how to get it back on…..will keep trying. Hope everyone stays their course and looks for the small things in life to be grateful for….like not having to go outside today because of the cold and wind!😂

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@migizii

@migizi just to let others know, this is the only connect message to come through in a few days and am not being successful in figuring out how to get it back on…..will keep trying. Hope everyone stays their course and looks for the small things in life to be grateful for….like not having to go outside today because of the cold and wind!😂

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@migizii
Sometimes my yahoo email will send Connect messages to the spam box. If I go to the actual online version of yahoo mail and not app and mark a message as not as not spam it is usually good for a few months and then the process has to be repeated. The same may be happening to you. … even if different email carrier.

Oh .. also check your settings at Connect … you may have accidentally unsubscribed to something or changed some other setting.
ZeeGee

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@fourof5zs

@migizii
Sometimes my yahoo email will send Connect messages to the spam box. If I go to the actual online version of yahoo mail and not app and mark a message as not as not spam it is usually good for a few months and then the process has to be repeated. The same may be happening to you. … even if different email carrier.

Oh .. also check your settings at Connect … you may have accidentally unsubscribed to something or changed some other setting.
ZeeGee

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@fourof5zs - yes, that happens with my emails too, which is why I go through my spam box just to check, once a day. Responses go into spam, but strangely enough, the general Mayo Clinic Page comes through into my mailbox. 🤷🏼‍♀️

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