Prolia for Osteoporosis

Posted by dma053 @dma053, Mar 28, 2023

Has anyone had improvement taking Prolia for osteoporosis?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@victor5211

How did you stop it? How long had you been on Prolia. I have recently stopped Prolia but feel nauseas every day from my weekly Actonel. I guess it will pass.

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I had only 2 injections of Prolia and saw very good results. My relay med off Prolia is Fosomax and I will complete 2 years of it in May, probably more precaution than needed for only 2 injections.

What relay meds to use and for how long depends primarily on how long you take Prolia. Reclast is used by many people because they were on Prolia for a few years.

The best Connect thread on this top is "Support for those going off Prolia,'" Good in-depth discussions and references to published studies.

There are other bisphosphonates, like Reclast and Fosomax, that might provide protection but with fewer side effects for you on Actonel.

Good luck.

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@victor5211

Ok not sure if you want to know this. I didn't know anything about Prolia until l decided to stop it after my 4th injection. Well l have stopped but am now on Actonel. I was told after l stopped that l risked spinal injuries! I have lived with that for 5 months so l have been researching AMGEN, who make it and also the Data from our Australian Therapeutic Licensing Authority. 82 deaths and 2040 reports of adverse effects (most are fractures).
The Authority does not say it was Prolia only one single medication SUSPECTED.

So do not start it. Also in America when you get the information do they tell you it's made from the Ovary Cells from Chinese hamsters? Good luck to all of us. Jenny xx

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I have had no issues with Prolia and had good gains. It just has to be used carefully as directed and followed up with another med to maintain the gains. Each of the meds works differently.

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@jennjam

I have had good improvement. I have taken Prolia for many years, since 2011. I had taken Fosamax and Aclasta before that, with no improvement. The improvement on Prolia was very good in the beginning, but now seems to just be holding. I have had to use different machines lately and of course that isn’t good and also makes it hard to be sure where things are.
In 2019, I had a BMD test that included TBS, and the TBS score was 1.277, which is pretty close to the 1.3 score that is considered the bottom of ‘normal’ as I understand it. I had one test after that on a different machine that did not have TBS software. I have moved so now need to get a test on another different machine in the next couple of months, so I’ll see how that goes.
I should mention I have not practised the diligent exercise routine I used to, and I had watched my diet better before as well. I am hoping to get back on track with both. That likely has played a role.
When I started, there was no indication that Prolia was such a problem to stop using. I would like to stop using it but continue to get warned I need to stay on. I am rather angry that this wasn’t known when I started. I will be interested to hear if they can come up with a decent plan to quit taking Prolia.
I have not had any other tests, such as bone turnover markers or used bioidentical hormones, and I am not aware of any echolight scans available near me. It sounds like these would be better testing tools!

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I have been on prolia for 11 years and would like to go off because it is an immune suppression drug. Too bad they did not know that when we started taking it. I guess there is no way to stop the fractures if you get off. I am 88 and have to be so careful not to come down with an illness because of being immune suppressed.

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@greatgrannie

I have been on prolia for 11 years and would like to go off because it is an immune suppression drug. Too bad they did not know that when we started taking it. I guess there is no way to stop the fractures if you get off. I am 88 and have to be so careful not to come down with an illness because of being immune suppressed.

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We didn't know there would be problems going off Prolia, but I wonder if the drug company knew well before we were told? I'm a little suspicious, as you can tell. Still it seems it is one of the better drugs out there.
Interesting you replied now, as I am just going off the medication. I am working with an endocrinologist who is developing a protocol for me. I'm sure it will be like many others. Just waiting for blood work, etc. results. I am a new patient for her. I hope it works, and I don't have any problems!

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@jennjam

We didn't know there would be problems going off Prolia, but I wonder if the drug company knew well before we were told? I'm a little suspicious, as you can tell. Still it seems it is one of the better drugs out there.
Interesting you replied now, as I am just going off the medication. I am working with an endocrinologist who is developing a protocol for me. I'm sure it will be like many others. Just waiting for blood work, etc. results. I am a new patient for her. I hope it works, and I don't have any problems!

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Hi, all was painted so positive by physician in my initial appointment. I was very naive and went ahead and started. Now I am very fearful of all the potential problems with the medication and weaning off it. I only see a NP since the physician has since retired.
Wishing all the best going off prolia and thank you for taking the time respond to my posting.

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@sandrac

I have had no issues with Prolia and had good gains. It just has to be used carefully as directed and followed up with another med to maintain the gains. Each of the meds works differently.

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Sandra so happy it works for you. I was cross with myself that l did not research before l started and had no idea that it is difficult to discontinue or that there were so many recorded adverse effects.
Thanks for your positive feedback.

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@jennjam

We didn't know there would be problems going off Prolia, but I wonder if the drug company knew well before we were told? I'm a little suspicious, as you can tell. Still it seems it is one of the better drugs out there.
Interesting you replied now, as I am just going off the medication. I am working with an endocrinologist who is developing a protocol for me. I'm sure it will be like many others. Just waiting for blood work, etc. results. I am a new patient for her. I hope it works, and I don't have any problems!

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It will be interesting to see what drug you will transition on. It helps to have a good endocrinologist. Mine wasn't interested in my side effects of Prolia ("nothing to do with Prolia you must have something else"). He just wanted to infuse me with zoledronic acid. Think you call that Reclast in America.

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@jennjam

We didn't know there would be problems going off Prolia, but I wonder if the drug company knew well before we were told? I'm a little suspicious, as you can tell. Still it seems it is one of the better drugs out there.
Interesting you replied now, as I am just going off the medication. I am working with an endocrinologist who is developing a protocol for me. I'm sure it will be like many others. Just waiting for blood work, etc. results. I am a new patient for her. I hope it works, and I don't have any problems!

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Can you check in America any government data re adverse effects? I am thinking your Licencing Authority.

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@rjd

How long you can safely delay a scheduled Prolia injection should be thoroughly researched. Perhaps you could consult with your doctor or try to find some authoritative info. Best to look for research papers than rely on anything people say on social media sites.

I recall researching this issue when I was on Prolia and what I remember is that a delay of one month might not be a good idea, especially if you have been on it for a while. I no long have that research as I stopped Prolia almost 2 years ago. But the information is out there.

Good luck.

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Thank you for your support.

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@victor5211

Can you check in America any government data re adverse effects? I am thinking your Licencing Authority.

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If by America, you mean the US, I live in Canada. So I am probably not the right person for your search. Hopefully someone else will reply!

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