About to grudgingly enter a Prolia treatment. Endo warnings of extreme

I was put on Prolia and was on it for almost 6 years. I started experiencing severe jaw pain at the end of the 5th year and thought I had TMJ. I went to an oral surgeon and when he learned I was on Prolia, he told me to get off of it immediately. The pain in my jaw was like nothing I had ever experienced. I caution you that if you go on Prolia for any extended period of time, you may experience the same affect. I was told that the longest anyone should be on Prolia is 4-5 years. No one ever told me that.
I've been told now (after being off Prolia for 2 years) that I need to get on Evenity (the monthly shot for 12 months) and then start Prolia after that. I may be doing myself a disservice but I will not get on Evenity (side effects are signficiant) and definitely not on Prolia. So I started the AlgaeCal Plus and Strodium program 6 months ago and pray when I get my bone scan in another 6 months, I will show improvement. I hope whatever you choose, you find much success with little to no side affects.

Thank you for your responses.

On preparing for the first infusion, I had seen in months past suggestions/steps to take week before..
Would appreciate any reports

I am considering multiple drugs for OP. I am 64 Diagnosed in 2019 (and right before covid!) so didn't get follow up immediately. I just ate well - and tried (always active, ran, etc.) to limit activity to daily walks and lighter gardening.

My 2025 T-cores are L1-L4 -4.8 with .59 density and right hip -2.6 with .68 density. *These have not changed since original DEXA in 2019. I do wonder if we (women) have a perimenopausal dip in hormones, loose a lot of bone, and then stabilize until we have general age associated loss...so in general most women are diagnosed later in life. I had back pain and complained enough to warrant a DEXA.

Shortly after my 2025 DEXA I had a breast cancer (BC) scare. I had two forms (ADH - atypical ductal hyperplasia and LCIS - Lobular Carcinoma In-situ) of pre-cancer in my right breast and opted for a prophylactic double mastectomy due to genetics and life time risk score. The path report on the breasts showed no additional precancers/cancers and I required no further treatment. New lifetime breast cancer risk score is 2-3%. : ) Now it is time to deal with my bones....

I am seeing a bone specialist and below is a list of what is on the table for treatment. I am concerned about long term use of anything because I am still young - and there is longevity in my family with multiple in maternal line living to 100 and paternal 80 with my father soon to turn 92! I am healthy and have no prescriptions but I do take 2000 units of Vitamin D since I was a little low on a spring 2025 reading. All is good now.

I am looking for any pearls of wisdom on these drugs and welcome comments along the lines of "I wish I knew before I started this drug that...."

I have read more recent posts in this thread from persons who have been on OP drugs for 10 years and are in 70's and 80s' - would your choice have been different if you were younger?

My bone specialist recommends going for an osteo-anabolic and then moving to an anti-resorptive - or I could chose one and not the other - or none.

Anti-resorptives
These medications slow down the bone breakdown process so that your body can naturally build bone density back up
Fosamax/ alendronate - pill once a week for 3-5 years
Actonel/ risedronate - pill once a month for 3-5 years
Reclast/ zoledronate - IV infusion once a year for 3 years
Prolia/ denosumab - injection every 6 months for life

Osteo-anabolics
These medications stimulate new bone density to form
Forteo/ teriparatide - daily injection for 2 years, followed by one of the medications above
Tymlos/ abaloparatide - daily injections for 2 years, followed by one of the medications above

FYI I did not see an Oncologist because I had "Lobular Carcinoma In-Situ".. in situ meaning it didn't spread so isn't a cancer despite its name - and since there was no evidence of more BC. My PCP thought she would refer me since there is an oncologist in the area who works closely with BC patients who have OP ...and since drugs between the two diseases can have mutual benefit. I have not seen an endocrinologist because my metabolic panel is great. I do wonder if the oncologists would more deeply understand OP drug interactions - any insight?

@barbyb50 I was on Evenity for a year with great gains I then went on to Prolia for 2 injections and didn’t see any real gains then switched to Reclast. We will see at my next DEXA in August.

@anatomary Your spine T-score is really -4.8? I am hoping that is a typo for someone as young as you are.

I am a bit surprised not to see Evenity, generic name romosozumab, sometimes referred to as just "Romo", in your list of drug possibilities. Interesting that @kristie2 is the first person to reply to your post, and she mentions her results with Romosozumab.

Here is an amazing presentation, aimed at researchers and doctors, that someone else on Mayo Clinic Connect pointed me at. This doctor refers to Evenity/romosozumab as merely "Romo".

Cheers for the reply! Sadly, that was not a typo...lumbar is -4.8. I will definetly watch the video, find out more about REMS - and contact my specialist for a REMS test.

@anatomary when I started Evenity my T score was -4.6 in my spine. No real issues of my hips which is -1.3 and hasn’t changed at all from any of the bone meds.

Good to know - I had to look up my visit and follow up notes (so may names of drugs and different names for the same!) on why Evenity wasn't on the table. While some family members live until 100, others have a cardio issues - and I have a mild mitral valve prolapse. Apparently Evenity is contra-indicated for cardio folks. Good to know it works though! I am sure I will meet others and can share that information. Sounds like your doing well -good luck with your journey!

@rosem1953 Hello Rose- thanks for sharing. I popped in on this thread as I am just now exploring which drug, if any, to take for OP. I an sorry to hear about your jaw pain- and that you no one told you the longest you should be on it was 4-5 years. When you went off did you experience any side-effects - and how long before your jaw felt better? I know we can't count on everyone having the same experience but it is good to know outcomes..if you plan for the worst you will be satisfied with less than the worst!

I would also be interested in knowing how your next scans go. I am considering diet, supplements , and exercise to stave off any further reduction. I am 64 and contemplating not starting any drugs until I am closer to 70. I don't know if that would do greater harm then good -wish I had a crystal ball! Good luck with your journey - and praying you see no reduction in bone mass on your next scan.

@marimindy so glad I was helpful.

Blessings