How Long For Body To "Reset"?

Thank you for sharing all of this. I am supposed to have a Reclast injection in July to hold the Forteo gains. I will ask how the doctor how he feels about Fosomax.

You’re welcome. This is all so confusing and treated by multiple specialists without proper tracking for us to make informed decisions. Had I known the Reclast caused an immune response and stayed in my system for so long I would have not chosen this potent drug. I wish you the best on this journey

Did your doctor test your BTMs (bone turnover markers) prior to starting you on osteo-meds?

I got my 81 y.o. aunt off Prolia almost 2 years ago (she’d had 4 doses). She went on alendronate and will stop taking the alendronate in April of this year, so after taking it for 2 years.

With a t-score of -2.7 and no fragility fractures, I wouldn’t be rushing to take anything. Do you have other risk factors? What are your other t-scores? On my 1st DEXA, in 2019, at age 50.5, my lumbar t-score was -3.9 and both hips were around -3.1. My endocrinologist prescribed bisphophonates, which I took and now regret—no bad side effects, yet, but after doing my own research I learned that bisphophonates weren’t right for me because I have low bone turnover, which my doctor should have known, or tested for, because I also have hypothyroidism, which he prescribes my levothyroxine for.

Unfortunately, there are a lot of doctors out there that do more harm than good.

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

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

Thank you for your very detailed reply!

Based on your aunt's TScores, I am astonished that her doctor put her on Prolia which should rightly only be used for those at high risk of fractures and where other meds prove ineffective. It is probably fortunate that the doctor was not able to continue prescribing Prolia because there's no sure way of mitigating the rebound effect once you have been on Prolia for 4, 5 or more years

Thanks for the youtube link and the very useful pdf. I have seen another interview where Dr McCormick expressed his view that, for 3 or more Prolia shots, Alendronate is not potent enough to mitigate rebound and you would need to use Reclast (zoledronic acid). But i have read other sources that say Alendronate is ok for up to around 2-2.5 years of Prolia (see link below):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9081316/
Also, the following is a youtube video where the doctor recommends the use of Alendronate for someone who has been on Prolia for 2 years:

Did you do any BTM labs before starting treatment to use as baseline reference? You did your zol infusion in Nov 21 and your CTX in Nov 22 is 179. But a year later in Dec 23, your CTX is 130 (?). I would have expected your CTX to go up as you were not on any other osteo med after your zol infusion more than 2 years ago

Edit: saw from your earlier posts that you did not have any baseline BTMs done and your low CTX could be due to your hypothyroidism. I agree with your assessment that anti-resorptives are probably not appropriate for treating your bones. Are you currently considering anabolics? Personally, i am cautious about any osteo med and i want to give drug-free treatment a chance

I’m with you on wanting to try natural means instead of osteo-meds. It’s what I wanted originally but like so many others, my doctor pushed me towards meds and I trusted his opinion.

I won’t rule out osteo-meds all together but I’m not sure what would have to happen to make me decide drugs were my best option. The anabolics sound like they would work better for me but those drugs are so new and there isn’t enough info about the long term side effects and that concerns me.

For now, I plan to stick with my gym routine. I recently upgraded my membership so I can use the hydro-massage and the Ergoline Beauty Angel—I didn’t name it LOL—so basically, I’m adding vibration and red light therapy to try to help my bones. No idea if either will improve my BMD but I ate 5 to 10 prunes everyday for one year to try to help my bones so, basically, I’m willing to give anything, within reason, a shot. There is research to show that both red light therapy and LIV (low intensity vibration) can help bones.

I also want to incorporate the exercises (weight lifting) the patients in the LIFTMOR study did so I’m considering working w/ a personal trainer but I can’t start that until later in the year (after I get my aunt relocated closer to me).

You are certainly doing all the right things for your bone health! It's a shame that you had such bad advice from your endocrinologist. It makes me hesitate to look for an endocrinologist as they all seem to want to push drugs

Can i ask how your aunt coped with the Alendronate? I know when you were on it, you suffered acid reflux. I have only been on it for 6 weeks and i seem to get a little bit more side-effects each week. After the first tablet, i had stomach pain. This went away and was replaced by achiness in my knee, arm and then back. And yesterday, i had 3 episodes of tinnitus - something that i have not suffered for many years. I have no idea whether it was caused by the Alendronate but the info leaflet does not list it as a side-effect

My aunt hasn't had any issues with the alendronate. My mother who is 82 quit alendronate in 2022. After having taken it for several years with no issues (I think she'd been on it for 4ish years), my mom started having some type of throat problem and felt nauseous and was having a hard time eating--after a few bites she would feel queasy and she could only eat very mild foods (apple sauce, scrambled eggs, pancakes, etc) and she had dry mouth, which is horrible for oral health, and she had to use Biotene. After my mother quit the alendronate, these issues went away so most likely it was the alendronate that was causing the problems.

During the 1.5 years that I took alendronate, in addition to the acid reflux and heartburn, I did experience some body aches that I think were caused by the alendronate. With my hypothyroidism, it is sometimes hard to figure out what is causing what LOL but when on the alendronate I felt like I had more bone pain. When I told my mother this, she asked how do you know it's your bones--technically, I couldn't prove it but that is what it seemed like, not sure if that makes sense.

The ob/gyn who recommended that I stop taking the Alendronate works mostly with older post-menopausal women and she told me that many of her patients have problems taking Alendronate.

Have you considered HRT? The general rule of thumb is w/i 10 years of menopause and younger that 60. I've been posting for 1.5 years now that I finally found a PA who is willing to prescribe HRT for me even though I don't meet the criteria--I'm more than 2 decades post menopause--but I haven't quite decided if I want to do it.
I know you are in your mid-60s but a very low dose HRT might help but there are risk, as with all things. I recently watched this http://tinyurl.com/2y2za3uc and Dr. Doug Lucas says that one of his patient's takes testosterone and had an increase in BMD. I plan to ask my PCP about this during my appt next week. Note, HRT is not approved for treating osteoporosis so to be prescribed HRT it has to be for reasons the FDA has approved it for if you want your insurance to potentially cover it. I've also read that some doctors think it's ok to take HRT for life. This link https://www.lancastergeneralhealth.org/health-hub-home/2021/september/is-hormone-therapy-safe-for-women-over-65 states 'According to Wulf Utian, MD, medical director for NAMS, “There may be safety concerns, and the Society does recommend that a woman use the lowest dose of hormones for the time appropriate to meet her needs. But we know that, under some circumstances, hormone therapy can be appropriate for women over age 65, such as those instances when the benefits of treating hot flashes outweigh the risks or when a woman has a high risk of bone fractures and can't take other bone drugs or can't withstand their side effects.” ' Personally, I think HRT sounds like a much better option than bisphosphonates, I just don't know if HRT will work for me.

You shared that you have Sjogren. I just searched for "Sjogren and alendronate" to see if there was any info regarding if ppl with sjogren should avoid oral bisphosphonates, what I found was this "Primary Sjogren syndrome increases the risk of bisphosphonate-related osteonecrosis of the jaw" link:
https://www.nature.com/articles/s41598-020-80622-5
I'm not posting this to scare or worry you. I like to be informed and I know my endocrinologist failed to tell me things and do things he should have prior to prescribing bisphosphonates for me.

If you read through the article above it states "The results indicated that patients with pSS using BPs had an approximately two-fold higher risk of BRONJ as compared with a non-pSS cohort. Therefore, we postulated that pSS increased the risk of BRONJ." Since the risk of ONJ is low, a two-fold higher risk is still low overall.

After my one and only zoledronic acid infusion, when I started doing my own research, I found articles that stated that people with Tori are at higher risk for BRONJ. I have tori. If you aren't familiar with this it's basically boney growths in your mouth. I have them both on the roof of my mouth and I have mandibular, tori behind my lower teeth. The tori rarely bother me, but it bothers me that my endocrinologist did not ask about my dental health prior to prescribing bisphosphonates, which he is supposed to do. Also, in my research, I found that people with hypothyroidism are at increased risk of osteonecrosis in general, meaning not just of the jaw. Again, it seems that my endocrinologist should have mentioned this.

You might want to take a look at this website https://www.bonehealthtech.com/ their device, the OsteoBoost Belt, was fast-tracked by the FDA a few years ago (their idea of fast and my idea of fast are very different LOL). I have literally been waiting for years for it to become available. A few weeks ago they posted "Recently, Bone Health Technologies filed for Class 2 Prescription De Novo Approval with the FDA and was previously awarded Breakthrough Device Status. BHT presented data from their clinical trial at ASBMR 2023 and ENDO 2023. The results of this double-blinded, sham-controlled design provided significant evidence supporting the efficacy of the Osteoboost in mitigating the decline of bone strength in post-menopausal women."

Originally, they were saying the OsteoBoost Belt would be available in mid-2022. About a week before they made their most recent announcement--tired of waiting with no updates--I reached out to the company and received an email reply that they are hoping to have it available by mid 2024. On their website, you can add your name to their mailing list to get notified of when the OsteoBoost Belt will be available via prescription.

It's interesting that your mother suffered dry mouth from Alendronate. I already suffer this symptom from my Sjogren's but it seems like it has gotten much worse the past few weeks since i started on Alendronate. It does not seem to be on the list of side-effects

It seems that many people suffer side-effects from Alendronate and many have commented that it did not improve their bone density. But my reason for taking Alendronate is not really for increasing BMD but purely to mitigate the Prolia rebound effect. Hence i am not considering any other osteo med at this point in time

Once i am out of the Prolia rebound window (i believe it's 2 years), i will rethink my treatment options although i will be heavily leaning towards non-pharmacological treatments

Which is why the OsteoBoost Belt looks interesting. That and the Marodyne vibration plate although i prefer to see if there is more evidence supporting usage for osteoporosis before i commit to either one

Thank you for your research on Sjogren and Alendronate. In fact, one of the main reasons i want to quickly exit from Prolia and bisphosphonates in general is because Sjogren's makes me more prone to dental issues and ONJ is a big worry

It's interesting that you brought up the subject of tori which i have not heard of before. I do have a small bony lump at the roof of my mouth but my dentist had told me that it was not anything to worry about and that it was merely the remnant of a molar that had floated to that position - how it got there she never explained. Now i think it is more likely to be tori