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No, my doctor did not do any BTM tests prior to starting me on Prolia. I only found out about BTMs from my own research after 3 shots and when i asked my doctor, he said it was uncommon and he did not know any lab that does such blood work! Last week, i finally found another doctor who can order my BTM tests and i plan to do quarterly CTX tests starting from my 3rd month of Alendronate. Unfortunately, i will not have any base numbers to compare with. Without a knowledgeable doctor to interpret the numbers, i am trying to find out as much as i can online and learn from others who have been very helpful in forums such as this
So i would be very interested to know how you are managing your aunt's exit from Prolia. Other than putting her on weekly Alendronate for 2 years, are you doing regular (quarterly?) CTX and/or P1NP? What were her CTX numbers like if you can share? Did the CTX numbers remain low throughout the past year and a half or were there any spikes? Is there anything else you need to do or look out for during this "easing off Prolia" period?
My other TScores were Spine -1.3 and Total Hip -3.0. I do have Sjogren's but not sure if that would classify as a risk factor. Nontheless, if i knew what i know now, i would never have started on any osteo med but would have gone the natural route first. But what's done is done and i hope i can "reset" and undo any potential harm from the meds i have taken. It's unfortunate that i have to take one med, Alendronate just to prevent harm from another med, Prolia! Thus far, i have been getting achy feeling from my left knee, arm and lately, back. I pray they remain mild because i really do not want to go on Reclast and the only other option is Actonel which, from what i read, is not as effective in mitigating the rebound effect
Yes, i agree with you completely on your last statement. Unfortunately, we cannot just accept our doctor's advice and need to do our own due diligence
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With all of the the research I do regarding my hypothyroidism and osteoporosis, I joke that I could probably pass the MCAT 🙂
My aunt needs help with appts and doctors visits etc. So what happened is, she had her 5th Prolia infusion scheduled for Feb 2022 and when she showed up at the infusion center, she was told that her doctor had informed the infusion center that their practice could no longer prescriber her Prolia. She lives 4 hours away from me so....I had to call her doctor and get a referral to an endocrinologist and I based on what I'd read about rebound fractures, I was in a bit of a crunch to get it done quickly. The endocrinologist, like so many of them, didn't seem to be an osteoporosis expert. I asked about ordering BTMs but they didn't do it so I have never had her BTMs tested. I'm in the process of moving her closer to me in the next couple of months and by that time she will be close to done with the 2 years of alendronate. I plan to have her new doctor order BTMs when she stops the alendronate and again a year later.
I've only been helping her to the extent that I currently am since 2021. I scheduled her 2022 DEXA and I have the results in front of me. Note, she took alendronate for 5 years and then her doctor told her that you aren't supposed to take bisphosphonates indefinitely so she stopped the alendronate and in February 2020 she had her 1st Prolia infusion, She had a told of 4 Prolia shots, the last was in the Fall of 2021. Also, I know that for a while she did HRT but that would have been in the years following menopause and I don't know how many years she was on HRT.
Her 2022 DEXA results (done on a Hologic) shows
Lumbar Spine T-scores
Scan Date 3/22 T-score -1.3
Scan Date 9/19 T-score -1.5
Scan Date 6/15 T-score -2.2
Lumbar Spine T-scores
Scan Date 3/22 T-score -1.3
Scan Date 9/19 T-score -1.5
Scan Date 6/15 T-score -2.2
Total Mean T-scores for Hips
Scan Date 3/22 T-score -1.2
Scan Date 9/19 T-score -1.5
Scan Date 6/15 T-score -1.5
FEMORAL NECK
Scan Date 3/22 LEFT T-score -1.4
Scan Date 3/22 RIGHT T-score -1.4
TOTAL FEMUR
Scan Date 3/22 LEFT T-score -1.2
Scan Date 3/22 RIGHT T-score -1.2
Based on these results, I question why she was ever put on Prolia. I don't have the results of her 2023 DEXA handy (her 2023 DEXA was done approximately 20 months after her last dose of Prolia) but I remember the PA (who kept reading the DEXA report incorrectly) saying that her t-scores had slightly decreased but it was nothing to warrant any concern or change of course.
My aunt doesn't have any fragility fractures and she hasn't experienced any rebound fractures after stopping the Prolia. At again 79.5 she climb Stone Mountain (near Atlanta, GA) with me and she's fallen twice in front of me (doing things that are a good idea for anyone) and has broken anything.
I just found this link two days ago. It's an interview with Dr. McCormick. He says alendronate isn't powerful enough to lock in gains from Prolia, which is news to me. If you test your BTMs and think about the gains, if any that you got from the Prolia, it should help you make the best decision for you. Here is the link https://www.youtube.com/watch?v=aon8nx_q0DA
Also someone posted this very helpful BTM link today (also Dr. McCormick) https://food4healthybones.com/wp-content/uploads/2022/10/The-Importance-Of-Bone-Markers-With-Dr.-Keith-McCormick.pdf
And while I was searching for info the other day I found this https://www.ccjm.org/content/90/1/26 Note, I don't pretend to understand all of this but like so many others, I am piecing together what I can because I don't have a doctor I can trust, when it comes to my bones.
Here are the results of my BTM labs. My only zoledronic acid infusion was done in 11-2021.
CTx
December 2023 130
November 2022 179
Reference Range:
Premenopausal women: 34 - 635
Postmenopausal women: 34 - 1037
P1NP (these were the same exact tests but both were serum tests)
December 2023 33.5
Reference Range:
Premenopausal women: 13.9 - 89.1
Postmenopausal women: 10.4 - 97.8
November 2022 20
Reference Range:
Premenopausal women: 19 - 83
Postmenopausal women: 16 - 96
NTx (urine)
December 2023 13
The reference range on this is detailed but the lab results state that women with a baseline NTx value of >38 are at significant risk for a decrease in BMD. Then they list some probabilities for potential decrease of BMD and 13 is below the bottom range listed (which is 18 - 38) so I think I'm ok here. LOL.
NTx (serum)
November 2022 15.7
Reference Range:
6.2-19.0
Osteocalcin
December 2023 9.4
November 2022 8.8
Reference Range:
Premenopausal women: 4.9 - 30.9
Postmenopausal women: 9.4 - 47.4
Here a little info on NTx (serum and urine tests) https://emedicine.medscape.com/article/2093977-overview?form=fpf