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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Profile picture for suzlaidler @suzlaidler

I agree - I have just had my first Prolia shot 2 weeks ago and do have side effects
- hoping they disappear. I have numbness in my hands (feels arthritis related) and have been really fatigued - the latter seems better today. I was feeling great before the shot.
Much more research has to be put into this!! Our choices are so frustrating!

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I have taken Prolia for about 10 years. I had obvious side effects for the first 3 or so shots. I used Benedryl before shots for a while. Then the side effects went away and the Dexa scan looked better. Then in the past year or so I began taking a second Amgen monoclonal antibody, Repatha. I was light headed nauseous and fell a lot on that drug, but it took me a long time to figure out what caused what. But now I have detoxed from Repatha, stopped falling, and will likely continue Prolia with a cautious view. My uneducated, but experienced view is to do all the judging yourself and consider whether Prolia causes nerve damage symptoms., whether it coukd be affecting any auto-immune condition you might have.

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Profile picture for harper2018 @harper2018

I have received one injection of Prolia and I am struggling with constipation to the point where I am not willing to continue with the Prolia. My doctor dismisses constipation and back pain as non side effects of Prolia. I have had long standing constipation uses d/t taking an antidepressant, hypothyroidism, statin drugs. I have seen a gastroenterologist with suggestions for fiber. Fiber makes it worse. I am taking miralax. Has anyone else suffered from this?

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@harper2018 Yes same with me. My doctor recommended stool softener.

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I was diagnosed with osteopenia about 15 years ago in my early 50’s. One hip reading was right on the threshold of osteoporosis and considered as such. I was placed on Prolia (a history of stomach ulcers ruled out other meds) and did biannual injections for about a dozen years. I never had any side effects whatsoever and experienced significant improvements in all readings. Two years ago my endocrinologist and I decided that I should transition off Prolia. I have been doing Reclast infusions once or twice a year the last two years and my endocrinologist believes that I will be able to go on a drug holiday shortly. His view is that osteopenia should be treated on a 3-year basis and then re-evaluated. I know that Prolia is controversial but it worked as advertised for me and I have no ill effects at this point.

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Profile picture for mfitz41 @mfitz41

I was diagnosed with osteopenia about 15 years ago in my early 50’s. One hip reading was right on the threshold of osteoporosis and considered as such. I was placed on Prolia (a history of stomach ulcers ruled out other meds) and did biannual injections for about a dozen years. I never had any side effects whatsoever and experienced significant improvements in all readings. Two years ago my endocrinologist and I decided that I should transition off Prolia. I have been doing Reclast infusions once or twice a year the last two years and my endocrinologist believes that I will be able to go on a drug holiday shortly. His view is that osteopenia should be treated on a 3-year basis and then re-evaluated. I know that Prolia is controversial but it worked as advertised for me and I have no ill effects at this point.

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@mfitz41: I know a lot of people are averse to Prolia injections but I also have taken that drug for osteoporosis for 5 years with no ill effects. But, just a heads up, Prolia and Xgeva used to be the only name brands for this targeted therapy/denosumab. But last June a new brand name of denosumab, Jubbonti, was approved and my health care clinic switched. I had terrible side effects from the new version, bladder pain being the worst. I just found out today that my health care organization has granted me an exception and in the future I will be only be getting Prolia injections.

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Profile picture for Maryann @mkoch

@mfitz41: I know a lot of people are averse to Prolia injections but I also have taken that drug for osteoporosis for 5 years with no ill effects. But, just a heads up, Prolia and Xgeva used to be the only name brands for this targeted therapy/denosumab. But last June a new brand name of denosumab, Jubbonti, was approved and my health care clinic switched. I had terrible side effects from the new version, bladder pain being the worst. I just found out today that my health care organization has granted me an exception and in the future I will be only be getting Prolia injections.

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@mkoch Thank you for sharing this. I’m so glad that you were able to get an exception approved.

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