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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@jheieck

Hi I've posted a few times about my dilemma with trying to transition from Prolia to something else due to complications with dental work and possibility of ONJ, but I've never really read the breakdown of what happens during rebound when you go off of Prolia. This is pretty scary given the fact that I have been on Prolia for 6 years, meaning I've had at least 12 injections if not 13. I am due for a Prolia shot end of December early January but I'm waiting to get into the endocrinologist to evaluate my parathyroid activity, which is elevated, and to see what my options are for weaning off Prolia. This doesn't sound to promising to me. Does anyone on the thread know just how long someone can be on Prolia before there are other long-term effects? I'm only 70 years old. What if I stay on Prolia till I croak? That could be another 15 years and 30 more shots?? Why was this medication even put on the market? Certainly wasn't told that people who have extensive dental work should not go on it, not by my doctor... I found out on my own.

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I am in your exact situation. What did you decide?

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@whiteswan

Gently , thank you.
Gently, we moved to Melbourne FL from Atlanta 7 years ago. I was with 3 endocrinologists. First one I left because I think he simply waits his retainment and only recently a friend (bridge game group) told that he did wrong diagnose, removed her thyroid, it was a mistake, now she needs take pills every day. Then endocrinologist with whom I now and for second opinion I took an appointment with third, she is an endocrinologist of my husband, a wonderful lady. She prescribed me low doses of Reclast and Medicare called her and told that it is impossible. I stay with my endocrinologist because I thought she knows her subject good. But may be I am wrong, when after breaking my hand I came with a lot of printed researches how to discontinue Prolia, first question to me was Are you a physician? and she asked to copy all these papers.
I hope that words your favorite endocrinologist are right for me and 1 Reclast works 2 years. I read (I need to reread again) that Reclast after Prolia must be done 2 infusions. Tymlos and Forte DO NOT work after Prolia immediately, density after Prolia drops with these medicines according Mayo clinic. A code even for 1 mg of Reclast is the SAME, but it must be something else, Medicare told me that they can not tell me, they will lose their job.
So it looks so way, my husband feels better and second 5 mg Reclast must be done soon or later.1 month in bed or fracture', which weight more?
In Orlando there was a very good endocrinologist, but she moved. May be somebody from Orlando here?

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Who was the very good endocrinologist in Orlando and where did they move to?

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@finch

Who was the very good endocrinologist in Orlando and where did they move to?

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It was about 5 years ago and I looked for endo for troubles with my thyroid by internet, I do not remember.
Now I looked for endo anywhere in the USA for osteoporosis.

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@cdst

I have been told by my Endocrinologist that it is safer to have dental work (pulling teeth) done at the beginning of the 5th month on Prolia and then, you are only off Prolia for 30 days rather than 90..

I argued, who can schedule a dental emergency?????

I do want to know if the 5th month for implants has been recommended to anyone else.

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Having been on Prolia for 4 years, I needed 2 teeth extracted. I had an excellent oral surgeon who had a lot to say about Prolia and other osteoporosis drugs. I got the impression I may not have needed to go off Prolia for this. Zometa (which I was planning on using to transition off Prolia) horrified him. For the real expert opinion, I think it is the oral surgeon you need to discuss this with.

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237 women who were on Prolia, SUSPECTED drug (only ones who have reported this adverse effect to the Government) in Australia have osteonecrosis. This is the death of the jaw bone (ONJ). It can occur when you have invasive dental work when you are on Prolia.

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@jheieck

Hi I've posted a few times about my dilemma with trying to transition from Prolia to something else due to complications with dental work and possibility of ONJ, but I've never really read the breakdown of what happens during rebound when you go off of Prolia. This is pretty scary given the fact that I have been on Prolia for 6 years, meaning I've had at least 12 injections if not 13. I am due for a Prolia shot end of December early January but I'm waiting to get into the endocrinologist to evaluate my parathyroid activity, which is elevated, and to see what my options are for weaning off Prolia. This doesn't sound to promising to me. Does anyone on the thread know just how long someone can be on Prolia before there are other long-term effects? I'm only 70 years old. What if I stay on Prolia till I croak? That could be another 15 years and 30 more shots?? Why was this medication even put on the market? Certainly wasn't told that people who have extensive dental work should not go on it, not by my doctor... I found out on my own.

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The trouble is there is no data. Drs and endocrinologist, l think are flying blind. So no studies on which bisphophonate is most effective, how long one has to be on the bisphophonate, or as you mention exactly how many years that we have been on Prolia?? Like you l have asked drs if they have patients who have successfully transitioned and no definite answer.
I agree with you who said why is it still on the market. Here in Australia, l have read AMGEN now have 76% of the market as it seems to have become the Dr's choice. All very distressing for those of us trying to get off it.

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I am on prolia I have 3 injections in the last 18 months and I would like to come off it due to side effects can I do this savely by going cold turkey

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@brunobozo

I am on prolia I have 3 injections in the last 18 months and I would like to come off it due to side effects can I do this savely by going cold turkey

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It is my understanding that without a followup drug like reclast you would be at risk of rebound.

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brunobozo, you can't stop Prolia without the risk of multiple fractures, unless you take something to counteract rebound, Prolia stops acid producing cells osteoclasts in their final stage. But those cells collect sometimes combining to form large aggressive cells. When you quit Prolia these cells are released. Some experience what are called cascade fractures where one vertebra collapses after another. It is even dangerous to be late for a Prolia injection.
The usual drug to follow Prolia is Reclast because it is the strongest bisphosphonate, the most capable of blunting those osteoblasts.
I do think it is good that you are stopping Prolia, but hope that you don't try it without a replacement medication

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@gently

brunobozo, you can't stop Prolia without the risk of multiple fractures, unless you take something to counteract rebound, Prolia stops acid producing cells osteoclasts in their final stage. But those cells collect sometimes combining to form large aggressive cells. When you quit Prolia these cells are released. Some experience what are called cascade fractures where one vertebra collapses after another. It is even dangerous to be late for a Prolia injection.
The usual drug to follow Prolia is Reclast because it is the strongest bisphosphonate, the most capable of blunting those osteoblasts.
I do think it is good that you are stopping Prolia, but hope that you don't try it without a replacement medication

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I have only had 1 Prolia injection and won’t be having any more
Walking twice a day
Joined the gym
Upped D3 and added K2
Feeling good
Hopefully that’s enough
I had no symptoms just the result of Bone Density

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