Can I quit Prolia shots after taking five shots without problems?

Posted by wnk @wnk, May 20, 2024

May I quit taking Prolia shots after taking five shots without having rebound problems? I had a Dexa October 9, 2023 and the bone mineral density for my left femur was 0.631 gm/cm sq. with a T-score of -2.0 which was an improved bone density by 4.4% from the prior study. My lumbar spine (L1-L4) had a bone mineral density of 0.840 gm/cm sq. with a T-score of -1.9 which was an improved bone density of 10.8% compared to the prior study. A doctor told me I could just quit the Prolia shot without any other treatment but I am concerned about the "rebound problem" that I have been reading about. Thanks for any response.

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@awfultruth

@suzieqqqqq You suggest that the risk of rebound to Prolia starts at 5-6 fractures. I have never seen evidence that there is a known number of Prolia shots before rebounds happen. If you can find sources for this statement please post it. Your comment could be taken by other readers to mean that it is safe to stop Prolia without a follow up med if you've had up to two years of Prolia. I think that would be dangerous.

It is generally acknowledged that the longer the time on Prolia the greater the risk of multiple fractures after stopping. But again I have never seen anything showing that it is safe to have 4 shots and then stop without a follow up med to help stop the bone loss and possible multi fracturing.

Also it depends on what you mean by "rebound". If you stop with just one Prolia shot you rebound in the sense that you lose the bone you gained from that shot (and maybe more). If you have 10 years of Prolia and stop, you lose all the gain you had with those 10 years. That's one part of "rebound". The other part is that some people start having multiple fractures after stopping. Sometimes large numbers of fractures. I've seen as many as 8-12 fractures claimed on the user groups. Starting and stopping Prolia is serious business.

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I totally agree with you that Prolia is a serious med, and all decisions need to be made in partnership with your doctor. The 5 to 6 number that I remember is from the clinical studies that were presented in Santa Fe earlier this year – – But certainly, I am no expert, And I had hoped that my comments were taken in that light. I hopes that each person can find a great doctor. They feel good about and make their decisions accordingly.

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@cliffordfry

I stopped Prolia about two months ago and already feel new minor pains in spine. I know there is an increase in Spine fractures when quitting Prolia, but how much is this risk of increase? I am nearly 79 years old and have had one compression fracture back in 2005. I am not wanting another one. 🙂

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I stopped Prolia after about 6 shots and went on Boniva monthly, exercising, eating healthy etc. After a little over a year I have had 3 new compression fractures of the spine and my bones are very fragile. I am 67 years old! The rebound effect of stopping Prolia can be devastating so make sure you have a good plan for transitioning . I know now my PCP was not knowledgeable enough about the risks of stopping Prolia. You basically need to plan to be on it the rest of your life if you start.
I started Tymlos 4 days ago and I am praying it helps me build back some of the bone I have lost and I can go forward from here much more informed.
So many of us are just flying blind, trusting our medical professionals to lead us in the right direction….
This forum has been so helpful to me!

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@jennirdh

I stopped Prolia after about 6 shots and went on Boniva monthly, exercising, eating healthy etc. After a little over a year I have had 3 new compression fractures of the spine and my bones are very fragile. I am 67 years old! The rebound effect of stopping Prolia can be devastating so make sure you have a good plan for transitioning . I know now my PCP was not knowledgeable enough about the risks of stopping Prolia. You basically need to plan to be on it the rest of your life if you start.
I started Tymlos 4 days ago and I am praying it helps me build back some of the bone I have lost and I can go forward from here much more informed.
So many of us are just flying blind, trusting our medical professionals to lead us in the right direction….
This forum has been so helpful to me!

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@jennirdf McCormick told me that Boniva is not a good choice among the bisphosphonates to manage rebound, and after 6 shots would recommend Reclast. I have several fractures and extend my sympathies! MCCormick in "Great Bones" and Leder in his video on You Tube (Combining and Sequential Approaches to Osteoporosis) say that Tymlos and Forteo are not effective after Prolia but since you did a bisphosphonate in between, I am hoping you get good results. Maybe you can do Evenity after the Tymlos as well.

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@windyshores

If you have been on Prolia that long, my doctor would insist on Reclast @tb39. He would say Fosamax is not strong enough but if you cannot tolerate Reclast, that would be your only other option. Do you have any GERD/reflux?

To me, your DEXA scores are amazing. What were they when you fractured? I have read somewhere that even if your score does not plunge, your fracture risk could rise sharply. Talk to your doctor about this!

Keith McCormick wrote "Great Bones," a book that many of us use, and there is a section on how to carefully transition to Reclast from Prolia using bone markers.

Reclast will cause a few days up to a week+ of an acute phase reaction for many of us. For me fever of 99+, aches, headache but after the first one the second one tends not to have it, according to various articles. I did not have a fever the second time. Most people I know tolerate it pretty well. I have a few side effects that are tolerable, more tolerable than my fractures!

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Thank you for your input, @windyshores. I do not have GERD. I just recently had two fractures that were due to falls so my numbers would have been the same. I also believe that Fosamax would not be strong enough. My endocrinologist has recommended Reclast and my rheumatologist just went along with the suggestion. Neither of them mentioned any concern about side effects.
It's shocking to me how quickly and easily the physicians prescribed meds without fully explaining the pros and cons. I guess it is up to us to educate ourselves.
When I look back at my records, I do not think that my numbers were ever low enough to require meds. I wish that I had done more research and tried to work on improving my bone health naturally.

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Everyone is different of course but I had a serious rebound effect after going off Prolia within 15 months, even w a biphosphonate directly following. Do plenty of research and maybe get a second and third opinion, you do not want to have happen to you what some of us are going through. It was never explained to me either the trauma of what the rebound could do to me. I am (was) and otherwise healthy, active, fit 67 yo
Who right now feels like a bent over old lady, trying desperately to get some vitality back. One of the main things I am working on is forgiving myself for not asking more questions and researching. But I am trying to look forward now, and just get better!

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@jennirdh

Everyone is different of course but I had a serious rebound effect after going off Prolia within 15 months, even w a biphosphonate directly following. Do plenty of research and maybe get a second and third opinion, you do not want to have happen to you what some of us are going through. It was never explained to me either the trauma of what the rebound could do to me. I am (was) and otherwise healthy, active, fit 67 yo
Who right now feels like a bent over old lady, trying desperately to get some vitality back. One of the main things I am working on is forgiving myself for not asking more questions and researching. But I am trying to look forward now, and just get better!

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How many injections did you have? Had you had previous fractures?

I am experiencing the same feeling as you. I feel so stupid not asking questions when l was prescribed prolia. Dr did not give me any information.

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@windyshores

I thought that Forteo and Tymlos did not work to stop bone loss after Prolia. You are in a bind because you have done bisphosphonates already. Both Prolia and bisphosphonates are anti-resorptives and the effect of those (atypical fractures) can occur if taken too long.

Someone posted a video with Dr. Paul Miller the other day where a bunch of endos discuss meds and they said that preliminary studies show that Evenity can stop Prolia rebound. Personally I would try to convince the doctor to try Evenity- or find another doctor. It would seem, from what I have read and been told, that you don't have any other good options.

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Of course Evenity is made by the same company as Prolia, AMGEN. How clever to produce a drug which you cannot stop and then come up with another drug. No wonder they just floated on the American stock exchange. They have also bought up many global biotechnology factories.

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@cliffordfry

I stopped Prolia about two months ago and already feel new minor pains in spine. I know there is an increase in Spine fractures when quitting Prolia, but how much is this risk of increase? I am nearly 79 years old and have had one compression fracture back in 2005. I am not wanting another one. 🙂

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May I ask why you stopped. Was it your decision or was your physician involved? It sounds risky to ... stopping without a plan to manage rebound.

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Just an FYI.... I was on Prolia for two years and started Evenity. I just had my 12th Evenity shots. I had a DEXA the same day as my last shots. I gained 8% in my spine and had gains in hips and femurs as well. No fractures coming off Prolia. I was a -3.8 going into Evenity and now a -3.3. I am wondering what to do next since I am 71 and don't want to start Prolia again until all my other options are exhausted. Wish I could stay on Evenity for at least 6 more months. Is Forteo an option?

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@gravity3

May I ask why you stopped. Was it your decision or was your physician involved? It sounds risky to ... stopping without a plan to manage rebound.

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I had a fracture of L2 in 2016 when I was coughing badly with bronchitis. It amazes me that the dexas still show “osteopenia” for my diagnosis, even after 4 fractures! There is so much margin of error in the scans; the skill of the technician, the radiologist who reads them, I know for a fact from looking at my past results that sometimes the radiologist (different ones) has included a compressed vertebrae in the analysis which of course will read very DENSE and throw the whole thing off. That’s why I am now insisting on bone turnover marker labs every 3 months.
I had 5 injections of Prolia, so two and a half years of it. My physician never discussed with me the possibility of a rebound effect and put me on monthly Boniva. I wanted to stop bc I was wary of ALL injections and concerned that they would start using MRNA in them. I did not get the covid shots and was becoming distrustful of the direction the medical professionals were going, all corporate and pushing all vaccines on everyone, especially those who had natural immunity. That’s it in a nutshell. Of course the irony is that now I inject myself every day w Tymlos…
That’s a long answer but hopefully explains my thinking.

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