Support For Those Quitting Prolia

Hi Michael,
I must commend you on a very well-done presentation and a professional looking video! I really thought you were a doctor until i read your post above!

I found the section on stopping Prolia very helpful and encouraging. I was less thrilled on the part promoting the use of Prolia under different circumstances.

I didn't want to discuss the pros and cons of Prolia in this discussion thread which, as i stated earlier in my first post, was to cater for those who already decided to quit Prolia but feel i should at least say something to act as a balance to the "positives" mentioned in the presentation.

To me Prolia is like a never-ending tunnel. Once you start on it, it becomes progressively harder to get off it.

See below video by Cleveland Clinic:

In that case, someone will ask - why stop at all then if the drug works and the side-effects are manageable? To that, i can point out 3 things:

Firstly, there is safety data available for Prolia for only 10 years and most doctors would not advice staying on Prolia for longer than 10 years. So for someone in the 80s or 90s, it could be an option but consider too the next 2 points

Secondly, once on Prolia for around 5 years, there are significant risks of multiple vertebral fractures and osteonecrosis of the jaw and this risk increases the longer one is on Prolia. Prolia reduces bone absorption immensely and this slows down any bone healing after say, any invasive dental work. So staying on Prolia indefinitely brings on increasing risks

Thirdly, circumstances could lead to an unplanned cessation of Prolia, even if temporary, for example, stoppage of insurance coverage upon reaching a target or satisfactory TScore (in fact this was what happened in the past leading to multiple fractures) or as we all experienced, a Covid lockdown. If this sudden unplanned cessation happens after one has more than 1 injection, there will be the risk of rebound effect

As pointed out by some practitioners, there may be cases where Prolia is the best option - the one i have read is where there is a very high risk of impending fracture and a need to very quickly bring down this risk - but i believe these are limited

I have deliberately not bring up the topic of the efficacy of Prolia (and anti-resorptives in general) in improving bones as i did not want to stir up a hornet's nest but there are many who question if anti-resorptives merely add a layer over existing weak bones, hence improving bone density numbers without actually improving their quality

Above are just my views. Like you, i am not a doctor and i am only putting out the above as things that can be brought up and discussed with a PCP/specialist if necessary

I appreciate learning of everyone’s experiences. I’ve been on Prolia for two years, (4 injections)with no side effects to date. I had three spinal compression fractures in 2023. I will have a Dexa scan next month. I did get a bit stressed when I needed a root canal. I know having an extraction or implant is not an option on Prolia. The edodontist said even if he sent me to an oral surgeon he would refuse treatment because Prolia can cause complications. The endodontist had me start amoxicillin two days before the root canal and continue thru ten days as a preventative measure. He also put in calcium into the tooth with a temp seal. I will return to learn if this has worked. If not the option is to remove the tooth above the gum line, stitch the gum closed. The body will eventually absorb the part of the tooth that is left. My regular dentist said that is a procedure that is used sometimes in my situation. If the tooth is stable, a new crown will be next. Oral meds are not an option because I have a hiatal hernia and take Prilosec.

I am remiss at not posting earlier my CTX, P1NP, and Dexa results from June, 2025 for reasons explained further below. First the results:

To recap. Received 2 Prolia injections, stopping in May 2023. Started weekly Fosomax at that time with no baseline biomarkers.

CTX
May 2024: 313
Dec 2024: 367
Mar 2025: 159
June 2025: 291

P1NP
May 2024: 31.6
June 2025: 44.8

Dexa
May 2022: -2.7 hip; spine normal; start Prolia
May 2023: -2.2 hip; spine normal: stop Prolia and start Fosomax.
June 2025: -2.6 hip; spine normal; Dr wants me to start Prolia again. I want a drug holiday

Fosomax:
Started weekly pill after stopping Prolia in May 2023.
Halved the dosage in November 2024.
Stopped Fosomax March 2025.

So the DEXA result was disappointing in light of the biomarkers. I will say only this: the disappointing result equaled the disappointing sloppy tech work involved with taking the DEXA. This particular tech had previously used great care and scrutinized positioning at my DEXA 2 years earlier. (He was using crutches this time so maybe he was in a hurry, in pain, or had trouble standing. The entire PCP practice (4 doctors) had become 'in a hurry' since it was bought out by a private equity group operating out of Florida, which has been buying similar practices all over Fla and Tx. Definitely became a Medicare Mill.)

The delay in posting my info here came as result of another potentially very serious medical issue grabbing my attention and energy. Also, the delay was a result of a move to a different geographical area hoping for the availability of better medical care. Moving to a new place and finding new practitioners is very time consuming.

I just connected with a new PCP and in that overwhelming 1st visit, neglected to request another CTX test after the June result. We did not discuss osteoporosis as much as a couple more critical medical issues. Therefore, do not know whether the March CTX of 159 was an outlier. I did stop the Fosomax in March but difficult to believe the CTX test 3 months later could have increased that much.

Will ask my new PCP if I can get a CTX test before my next round of blood tests and while awaiting a follow-up with a specialist on the matter of more critical medical concern, having had several tests not showing up anything as yet.

Until I received the DEXA result, had thought things were looking OK. A CTX of 291 and P1NP of 44.8 was within the respective ranges McCormick cites favorably in his book. Those ranges are CTX :100-375 and P1NP 30-50.

Any thoughts and comments appreciated.

@rjd I would appreciate knowing what pages those CTX and P1NP numbers are in Dr. M’s book if you would be able to cite them. I don’t believe Dr. M talks about what ratio he likes to see. Has anyone heard what ratio he would like to maintain? Or any recommendation he makes in that regard?

@awesomemomx2

There is a chart 9FIG 6.40 at page 144 where Dr M lists various biomarkers, their usual reference range, and his opinion about those ranges. In the pages, following this chart he discusses in more detail his thinking about the CTX range he likes to see, starting at p. 147 and for P1NP range at p. 154.

I have not seen anything about a ratio but he does discuss that osteoclastic and osteoblastic activity must be in sync and coupled.

My memory is not always as reliable as I might wish, but do I remember correctly that you intended to consult with Dr M. Did you? And did that consultation involve something about newly discovered fractures that Dr. M was hoping to determine when those fractures occurred....prior to Prolia or post-Prolia?

What was your DEXA score when you stopped Prolia?

@rjd
I do not recall if Dr. M gave me a real conclusive answer about the xrays. I don’t think he could really determine the fracture timing. If he had I believe I would have really remembered.
My total spine T-score was -2.80 on 1/10/25 with my last injection of Prolia being 6/26/24. Here is some history regarding my spine T scores. My total spine T-score on 12/6/21 was -4.3 which was a drop from -1.7 in 2019 . As you can understand I was stunned by this stark decline. I had to go to a different machine because my GP’s machine was no longer in service. Knowing what I know now of course I would have been aware of all those pitfalls. I was scared and worried after getting that report back to say the least. Since it has been a challenging bumpy road of trying to find resources and a medical team . As we can all attest it is often expensive and littered full of conflicting research and opinions with no definitive answers and many risks. I started Prolia in June of 2021 without being told the risks. I will have another DEXA on the 10 of January 2026.
Here are my hip femur scores. My total Left femur 2019 -1.7; 2021 -2.1; 2025 -2.2 .
My total Right femur 2019 -1.7; 2021 -1.7; 2025 -1.3
You know when I decided to go on Prolia I had thought I had done my due diligence about seeking the right people and information and then I came to find out I had been wrong. It was a real blow. So now I am very skeptical about any and all of it. As anyone else felt this way and feel it is a challenge to work through it all. I will appreciate your comments.

@awesomemomx2
I completely agree with you that it's very frustrating working with some of these medical teams. The information out there is inconsistent and overwhelming! I too started Prolia in May, 2023 (30 months on the Prolia) without knowing the risks - or - the fact that this is a lifetime medication. I see a rheumatologist - which I'm now thinking I should be seeing an Endocrinologist. Here are my Dexa Scan scores: I thought there would be more of an improvement in neck and hip but maybe I'm wrong?? Doctor hasn't done any bone marker tests.
2023 2025
Left neck - -3.4 -3.4
Left hip - -3.1 -2.9
Spine - -1.9 -1.4

Are you going to continue the Prolia? Or are you thinking of another medicine?

@rjd
I do not recall if Dr. M gave me a real conclusive answer about the xrays. I don’t think he could really determine the fracture timing. If he had I believe I would have really remembered.
My total spine T-score was -2.80 on 1/10/25 with my last injection of Prolia being 6/26/24. Here is some history regarding my spine T scores. My total spine T-score on 12/6/21 was -4.3 which was a drop from -1.7 in 2019 . As you can understand I was stunned by this stark decline. I had to go to a different machine because my GP’s machine was no longer in service. Knowing what I know now of course I would have been aware of all those pitfalls. I was scared and worried after getting that report back to say the least. Since it has been a challenging bumpy road of trying to find resources and a medical team . As we can all attest it is often expensive and littered full of conflicting research and opinions with no definitive answers and many risks. I started Prolia in June of 2021 without being told the risks. I will have another DEXA on the 10 of January 2026.
Here are my hip femur scores. My total Left femur 2019 -1.7; 2021 -2.1; 2025 -2.2 .
My total Right femur 2019 -1.7; 2021 -1.7; 2025 -1.3
You know when I decided to go on Prolia I had thought I had done my due diligence about seeking the right people and information and then I came to find out I had been wrong. It was a real blow. So now I am very skeptical about any and all of it. As anyone else felt this way and feel it is a challenge to work through it all. I will appreciate your comments.