Support For Those Quitting Prolia

Thank you for your feedback it gives me a few options to ponder. Out of curiosity I went back and checked my last dexa scan taken May 2024. I was in shock to realize I have now moved to osteopenia category, I guess due to taking Prolia for 6 years? My lumbar spine T score is 0.9 and Z score is 3.0, my total hip T score is -1.1, and Z score is 0.4, my femoral neck T score is -2.3, and my Z score is -0.5. Conclusions indicate osteopenia now and NOT osteoporosis. My guess if is if I go off Prolia those numbers will change quite a bit. I do want to have a CTX blood test to see if I can have dental work in my future, since I am in a holding pattern right now with the two implants. I've never had a CTX blood test, to surprising given the fact that my bone health specialist knew that I was having extensive dental work. My oral surgeon never mentioned it either. Since I'm going to the endocrinologist in early January, I will find out if there's any way I can go off Prolia cold turkey. The bone health specialist wanted me to go on HRT, aka Evista, but I don't really like the side effects that I've read about at all, but I don't want to lose the obvious gains I've made all these years being on Prolia. My only other alternative would be to stay on Prolia and not have the dental work, just have a partial plate made That isn't my first choice, but it might be my safest choice, especially if I would like to transition completely off any drugs. Not easy choices here. I wish I had a crystal ball.

I have no idea @jheieck what your priority is, or how urgent the dental work is. I would ask your doctor if one or 2 Reclasts could be enough to "lock in" your gains and mitigate rebound. Using the CTX to time going on the Reclast so it is effective, and to monitor any rebound effect, would help. But I realize that delaying dental work may be problematic. I don't know the effect of rebound bone loss on dental work either.

There is a study on Evenity after Prolia but I don't think it was much time on Prolia. Maybe someone can retrieve it.

Have you considered a consult with Keith McCormick (osteonaturals.com)?

Did your bone specialist feel Evista was strong enough to combat Prolia rebound? I am surprised. But with your scores I suppose you can afford to lose some density.

I could try a consult. My bone health specialist is out of town this week because I wanted to call her and ask her why she never ordered a CTX blood test for me knowing I was having extensive dental work. She recommended Evista because reclast was her first choice, but when I had the bone erosion after the implants were installed and had to be removed subsequently, she did not feel reclast was safe for me. I don't think anything else besides reclast was considered strong enough for me, but she ruled it out.

@jheieck what a tough spot to be in! McCormick might be helpful-?

I sent an email inquiry.

The worst thing is that I had my last Prolia shot exactly 6 months ago so I don't have much time to make a decision about whether to get the next Prolia shot I think I only have about 3 weeks and I don't see the endocrinologist till January 6th talk about cutting it close

@jheieck that is a lot of pressure but it seems you do have time with your scores.
I wish you could do at least one Reclast.

You can also call McCormick's office and explain your time pressure. Pat is very nice (answers the phone).

I'll wait till January 6th and see what the endocrinologist says and go from there.

jheieck, I asked a trusted consultant. His response:

" [F]or patients treated with a potent anti-resorptive drug who may experience ONJ, my first choice is to switch them to an anabolic drug, usually either teriparaide (Forteo) or abaloparatide (Tymlos), in order to help heal the ONJ. However, studies show that taking teripararatide AFTER denosumab (Prolia) can cause temporary bone loss at the spine and hip, and perhaps permanent bone loss at the 100% cortical bone radius shaft.The way I would tend to manage this in a patient on Prolia would be to do conservative management of the ONJ while the patient is awaiting her next injection of Prolia, and plan to treat with teriparatide about when the next injection of Prolia was due. Not to treat her osteoporosis, but rather to help heal her ONJ. It usually heals within a 6-month treatment course. Then transition the patient to the antiresorptive drug of her choice - either oral alendronate sodium, or IV zoledronic acid (neither of which is quite as anti-resorptive as denosumab (Prolia), or transdermal estradiol at a dose of at least 37.5 mg along with micronized progesterone at an oral dose of 100 mg at bedtime."

I have received the results of my fourth BTM blood test done in Dec 2024 after 50 weeks of Alendronate following cessation of Prolia; and my DEXA done in early Jan 2025, 13 months after my previous DEXA in Dec 2023. It's not all good news.

To recap - I did 3 half-yearly Prolia injections in Jul 2022, Jan 2023 and July 2023 and started on Alendronate at end-Dec 2023. My first BTM was in early Mar 2024, my second BTM was in end-May and my third was in Sep after 10, 22 and 36 weeks of Alendronate, respectively. I do not have any baseline BTM numbers. As per my opening post, I am sharing my BTM results in case it proves useful to anyone else monitoring their own exit from Prolia

[CTX]
CTX < 50 pg/mL (Sep: 54; May: < 50; Mar: 51)[range 171-970]
iPTH 4.9 pmol/L (Sep: 4.4; May: 3.2; Mar: 3.5)[range 1.6-6.9]
Calcium (corrected) 8.7 mg/dL (Sep: 9.1; May: 8.7; Mar: 8.3)[range 8.8-10.2]
Albumin 4.3 g/dL (Sep: 3.9; May: 4.1; Mar: 4.1)[range 3.5-5.0]

My CTX remains low and back to the mysterious, numberless '< 50' ! Calcium can afford to go up from its bottom of the range level.

[DEXA]
My TScores from my DEXA scan in Jan 2025 (Dec 2023 numbers in brackets):

Lumbar Spine -0.8 (Dec23:-1.1)
Femoral Neck -2.4 (Dec23:-2.6)
Total Hip -2.5 (Dec23:-2.6)

All DEXA scores have shown slight improvements over the past 13 months with lumbar spine falling below -1.

Now for the bad news.

[SPINAL SCAN]
I took the opportunity to also do a spinal xray scan and the results came back with a "Mild T12 compression fracture"! Was quite shocked and disappointed.

Some questions immediately pop into mind:

1) Having never done a spinal scan before, I don't know if this is an old or new fracture. But, as fractures should heal over a few months, perhaps it is not an old fracture?

2) If it is a recent fracture, could it be caused by the dreaded Prolia Rebound? But my CTX has remained very low throughout the post-Prolia period. And my lumbar BMD numbers are ok. What do others think?

3) I have read that fractures cause CTX to rise, sometimes dramatically. But my CTX has remained low throughout the past 13 months. Is this odd?

4) Should i cut short my post-Prolia relay period to allow CTX to rise to assist in healing?

5) Other than being careful and not aggravating the fracture, what else can I do to assist the healing? Are exercises and/or stretching recommended?

My aim is to cease all anti-resorptives as soon as possible. My original plan was to cease my weekly Alendronate at end-Dec 2024; move to fortnightly Alendronate for 6 months, followed by monthly Alendronate for another 6 months before stopping Alendronate altogether at end-Dec 2025. But, given my continued low CTX, I was planning on being more aggressive and do instead, 3 months biweekly, 3 months triweekly and 3 months monthly and cease by end-Sep 2025. Now, with the fracture, it might be better to shorten it even more.

I will continue to rely on timely BTM tests to alert me to any possible rebound effect

Any insight or comments on the above numbers, questions and/or plan of action is very welcome