1. < Osteoporosis & Bone Health

Prolia discontinuation

Posted by czauderer @czauderer, Dec 12, 2024

Hi, due to an osteoporosis diagnosis, I took two injections of Prolia six months apart and due two side effects, I want to come off of it. I do not want to transition to a bisphosphonate or remain on one. How do I take myself off of Prolia safely? I am not getting a straight answer from my doctor.

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gravity3 | @gravity3 | Feb 9 5:52am
In reply to @auntieoakley "I hope that your doctor works with you on this. All medical treatments involve risk/benefit evaluation...." + (show)
@auntieoakley

I hope that your doctor works with you on this. All medical treatments involve risk/benefit evaluation.
My doctor had me take a break from the prolia before having a molar pulled then a continued break before resuming treatment. I had no adverse affects from the break or the extraction.
Also there is a medication that you can take to kind of lock in the gains from prolia after you take it for a couple years then discontinue.
If your doctor isn’t giving you information and options, would you be willing to get a second opinion?

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What is the medication you referred to Chris? Thanks

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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Feb 9 9:04am
In reply to @gravity3 "What is the medication you referred to Chris? Thanks" + (show)
@gravity3

What is the medication you referred to Chris? Thanks

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I did not have this but the NIH says it is always recommended to have a short course of a bisphosphonate upon discontinuing prolia. I believe but not positive that Reclast, mentioned by @gently is one. I am sure my doctor would have mentioned it but my prolia was stopped abruptly during the pandemic as the seats became fewer and the chemo infusions were more important (rightly so).
I know I am taking my chances with a fracture but I do my best with diet, supplements and exercise.
Are you comfortable talking to your doctor about this?

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2 replies
gravity3 | @gravity3 | Feb 9 9:13am
In reply to @auntieoakley "I did not have this but the NIH says it is always recommended to have a..." + (show)
@auntieoakley

I did not have this but the NIH says it is always recommended to have a short course of a bisphosphonate upon discontinuing prolia. I believe but not positive that Reclast, mentioned by @gently is one. I am sure my doctor would have mentioned it but my prolia was stopped abruptly during the pandemic as the seats became fewer and the chemo infusions were more important (rightly so).
I know I am taking my chances with a fracture but I do my best with diet, supplements and exercise.
Are you comfortable talking to your doctor about this?

Jump to this post

Thank you so much. I am having a consult with another endocrinologist at Duke. I do feel comfortable talking with my current endocrinologist but wonder if he is current enough on different sequencing paths.

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pami | @pami | Feb 10 9:53am

Does anyone know if a bisphospate is needed after Evenity to start an anabolic

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bocabird | @bocabird | Feb 10 12:54pm

I had one injection of Prolia January 2024 and had terribe side effects-in July of 2024 my End. put me on actonel weekly 35 mg (generic) which I am not happy about- I usually like brand -most generics are made in India and there has been found some lack of quality control. I also have some issues swallowing certain foods. I too would like to go off everything- take a lot of calcium and due a lot of weight bearing exercise.

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dlc1953 | @dlc1953 | Feb 11 4:08pm
In reply to @auntieoakley "I did not have this but the NIH says it is always recommended to have a..." + (show)
@auntieoakley

I did not have this but the NIH says it is always recommended to have a short course of a bisphosphonate upon discontinuing prolia. I believe but not positive that Reclast, mentioned by @gently is one. I am sure my doctor would have mentioned it but my prolia was stopped abruptly during the pandemic as the seats became fewer and the chemo infusions were more important (rightly so).
I know I am taking my chances with a fracture but I do my best with diet, supplements and exercise.
Are you comfortable talking to your doctor about this?

Jump to this post

Hi I had my last shot of Prolia in January, 2024. At that time I was on it for a year. It made my body ache. My hair started to fall out and my nails wouldn’t grow. They kept splitting and peeling. I started Reclast last summer. I feel good. My hair is growing back and my nails are strong and not splitting anymore. My concern was that my calcium was too low. I have Malabsorption Syndrome, I probably shouldn’t be on Prolia at all. Good luck.

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1 reply
cdst | @cdst | Feb 13 7:21am
In reply to @auntieoakley "I hope that your doctor works with you on this. All medical treatments involve risk/benefit evaluation...." + (show)
@auntieoakley

I hope that your doctor works with you on this. All medical treatments involve risk/benefit evaluation.
My doctor had me take a break from the prolia before having a molar pulled then a continued break before resuming treatment. I had no adverse affects from the break or the extraction.
Also there is a medication that you can take to kind of lock in the gains from prolia after you take it for a couple years then discontinue.
If your doctor isn’t giving you information and options, would you be willing to get a second opinion?

Jump to this post

Yes, I will talk to my Primary Care Provider also. I really need a specialist in this area. My Endo, seems to be more focused on Diabetes care…not something I have to worry about.

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1 reply
lugarpas | @lugarpas | Feb 14 5:25am

Hola, hace dos semanas me aplicaron mi primer PROLIA, y no tuve efectos secundarios. ¿Qué efectos tuviste tú?

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janetroberson1 | @janetroberson1 | Feb 14 10:37am
In reply to @cdst "Yes, I will talk to my Primary Care Provider also. I really need a specialist in..." + (show)
@cdst

Yes, I will talk to my Primary Care Provider also. I really need a specialist in this area. My Endo, seems to be more focused on Diabetes care…not something I have to worry about.

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I found osteoporosis and bone health experts in my local area by going to the website for the Bone Health and Osteoporosis Foundation. Here's the link: https://www.bonehealthandosteoporosis.org/find-a-professional/

My endo was also focused more on diabetes and gave me incorrect information about what exercises are appropriate for me. She also couldn't tell me why I should continue on Prolia, noting only that it's the gold standard.

Good luck.

REPLY
1 reply
hungrybirder | @hungrybirder | Feb 15 8:27am
In reply to @janetroberson1 "I found osteoporosis and bone health experts in my local area by going to the website..." + (show)
@janetroberson1

I found osteoporosis and bone health experts in my local area by going to the website for the Bone Health and Osteoporosis Foundation. Here's the link: https://www.bonehealthandosteoporosis.org/find-a-professional/

My endo was also focused more on diabetes and gave me incorrect information about what exercises are appropriate for me. She also couldn't tell me why I should continue on Prolia, noting only that it's the gold standard.

Good luck.

Jump to this post

The Find a Professional isn’t really helpful in the Houston metro area where the professionals listed include a dermatologist and an orthopedic specialist but none that make osteoporosis their specialty.

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