Prolia discontinuation

Posted by czauderer @czauderer, 2 days ago

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.

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

Reclast has been the only option for a long time. However someone posted about Evenity after Prolia so you might want to check with your doctor on that.

REPLY

@czauderer, the safest transition is Reclast--a bisphsponate. You were only on Prolia for a year, still you have the risk of rebound. I don't blame you for not wanting to transition to a bisphosphonate, but avoiding it could be a worse outcome. And there is a good chance that Reclast wouldn't even be bad.
So what happens you may already know is that while on Prolia the cells that breakdown the bones are held back in the last stages of development. When you stop Prolia all those acid producing cells are released upon your bones. Cascade fractures can result where the vertebra break compress one after the other. Fractured vertebra never heal in the prefracture configuration. You lose height and your spine bends forward. The new configuration is painful even after you heal and leads to other pain as the space where the nerves exit the spine becomes more and more narrow.
Maybe, consider the single injection of Reclast.
Whatever you decide, may you never fracture.

REPLY

Hello, czauderer,
These two ladies are highly knowledgeable. and helpful. There is alot of research out there to examine. I, myself ,have been trying to get off of Prolia after 5 injections. I wanted to do it sooner but was unable to get an endo to assist me. I see a new endo in January and am hoping that he will be willing to work with me about doing this. I had not been informed about the danger of coming off Prolia before going on it. While I haven't had difficulty with it I am very fearful of the rebound effect when coming off of it. Of course the longer you are on it the more challenging it becomes to curtail its rebound action. There is an article by GRASSI, et al entitled Zolendronate aftet Denosumab discontiuation: Is repeated administrations more effective that single infusion. It is a April 13,2024 article. in the Journal of Clinical Endocrinology and Metabolism. You find it helpful to read. Margaret Martin,PT, has a you tube video entitled Long term side effects of Osteoporosis drugs. I found that very interesting and informative. I would recommend that as well. A continued conversation would be welcome. Thank you.

REPLY
@awesomemomx2

Hello, czauderer,
These two ladies are highly knowledgeable. and helpful. There is alot of research out there to examine. I, myself ,have been trying to get off of Prolia after 5 injections. I wanted to do it sooner but was unable to get an endo to assist me. I see a new endo in January and am hoping that he will be willing to work with me about doing this. I had not been informed about the danger of coming off Prolia before going on it. While I haven't had difficulty with it I am very fearful of the rebound effect when coming off of it. Of course the longer you are on it the more challenging it becomes to curtail its rebound action. There is an article by GRASSI, et al entitled Zolendronate aftet Denosumab discontiuation: Is repeated administrations more effective that single infusion. It is a April 13,2024 article. in the Journal of Clinical Endocrinology and Metabolism. You find it helpful to read. Margaret Martin,PT, has a you tube video entitled Long term side effects of Osteoporosis drugs. I found that very interesting and informative. I would recommend that as well. A continued conversation would be welcome. Thank you.

Jump to this post

@awesomemomx2, I appreciate the link https://academic.oup.com/jcem/article/109/10/e1817/7645059 and didn't have a fix on how low < 280ng/L CTX should be maintained after Prolia. I haven't seen it elsewhere in the literature until this article. Also that CTX levels of greater than 212ng/L have 100% accuracy in correlation with BMD loss in this study in the context of stopping Prolia.
Couldn't see if the Zol dose is 4mg or 5 for the study. It is significant that there is increased risk of fracture at 9 months after Zol that could be mitigated with another dose. Thanks

REPLY
@gently

@czauderer, the safest transition is Reclast--a bisphsponate. You were only on Prolia for a year, still you have the risk of rebound. I don't blame you for not wanting to transition to a bisphosphonate, but avoiding it could be a worse outcome. And there is a good chance that Reclast wouldn't even be bad.
So what happens you may already know is that while on Prolia the cells that breakdown the bones are held back in the last stages of development. When you stop Prolia all those acid producing cells are released upon your bones. Cascade fractures can result where the vertebra break compress one after the other. Fractured vertebra never heal in the prefracture configuration. You lose height and your spine bends forward. The new configuration is painful even after you heal and leads to other pain as the space where the nerves exit the spine becomes more and more narrow.
Maybe, consider the single injection of Reclast.
Whatever you decide, may you never fracture.

Jump to this post

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.

REPLY

@jheieck,
@awesomemom2 posted this link https://academic.oup.com/jcem/article/109/10/e1817/7645059?login=false last night. It is a small Italian study that offers some indication about the length of time after Prolia that a person remains vunlerable.
The problem with Reclast is that it presents the same difficulty as Prolia with osteonecrosis. Because the bone antiresorptives saves has low blood supply, it is difficult for your body to fight infection with low blood flow, especially from bacteria introduced during oral surgeries.
It seems important to monitor CTX during the period of rebound. When CTX normalizes consistently you know you've passed the danger zone of fracture with rebound. The most significant risk is within the first few months continuing for the first year. It looks like there is safety from rebound in a two year Relcast application, but not from osteonecrosis or atypical femur fracture. Some people take Prolia for the rest of their lives, without fracture.
Prolia can affect the kidneys by increasing calcium loss. Then parathyroid levels increase in order to maintain calcium levels.
I share your opinion about Prolia. I suspect it is most often prescribed by doctors outside of the osteoporosis field. They can't warn you about what they are unaware of.
I'm hopeful about your path and interested in hearing more.

REPLY

Yes you hit the nail on the head I am in a catch 22 because I already have had symptoms of osteonecrosis of the jaw during my dental implant procedure. I had to have the implants removed two weeks later because some bone was erupting through the gum line. I also have elevated parathyroid activity in my last blood work done a month ago so they are suspicious of something else going on with me. I have never had a broken bone in my life and I have fallen many times since I've been on Prolia and before that. I am 70 years old and I'm wondering if my dexa scans could improve even just a little if I could just go off Prolia cold turkey because the alternatives are not promising given the jaw issues and the parathyroid issues. I am in a quandary and now will probably be involving three different doctors well one is a nurse practitioner, the one that administers the Prolia. I guess I can stay on Prolia and look for that window of 5 months out from my last shot, where you can supposedly safely have dental work?

REPLY
Please sign in or register to post a reply.