Anyone had their C-Telopeptide, serum levels checked?
Mine started at 588 in August of 2019, went on Risedronate 1x week (35mg) and level was down to 178 by October, 2021. Went off Risedronate December, 2021 and now at 375. My doc wants it below 350. I'm 62, all other labs are in great shape, I eat well, get lots of weight bearing exercise. Got some reflux so now doc wants to try Reclast infusion (1x per year, not more than 3 years). My DEXA: spine -2.3 , Femoral Neck -2.1, Hip total -2.2. I'm a bit nervous about an infusion. Thoughts? Can diet and exercise lower C-Telopeptide level? Thanks!
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Hiker11
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I've been having my serum CTx tested every 2-3 months for the past 2 years along with my P1NP (bone formation marker) every so often. I've also been on risedronate 35mg per week for the past 2.5 years, apart from 4.5 months on alendronate earlier this year. The reason for my frequent bone turnover marker tests is because I've been using risedronate as a relay drug to transition off Prolia and hopefully prevent rebound fractures. I didn't think that doctors/specialists measured CTx unless they thought there was a problem or that the bone turnover needed careful monitoring so as to quickly adjust treatment to prevent rebound, as in my case. I'd imagine that most doctors would use a two-yearly DEXA scan to diagnose the need for treatment. Yours obviously differs in this regard - not sure why.
The CTx reference range for post-menopausal women is <800ng/L and for pre-menopausal women is <400ng/L. I would be really happy with a result of 375 - and think that using a potent IV bisphosphonate to decrease your CTx by 25 points is overkill. Possibly your doctor has another reason for suggesting Reclast, and you do say that you have some reflux, but I would really question the need for such strong medication at this stage. All these drugs can have very nasty side effects, more so the injectables. You do not have osteoporosis at present, and most people under the care of informed medical practitioners manage their osteopenia by diet and lifestyle changes, and using supplements like vitamin K2, boron, magnesium, vitamin D3, melatonin and making sure they are getting enough calcium from their diet.
Might I ask what your DEXA results were a few years ago, before you started on the risedronate? Has there been a downward trend? If your bone density has been stable for a period of time, I wouldn't be considering medication. Predicting fractures is usually based on a DEXA change (if any and by how much) after a couple of years than by using a CTx marker at a particular point in time unless there is some underlying disease/condition which requires frequent monitoring and medication change accordingly.
So your bone mineral density (BMD) has improved marginally since your previous DEXA in 2018, which is good news. You were only osteopenic in 2019 when put onto risedronate for 2 years which I find puzzling. It appears that your practitioner was being pre-emptive by prescribing medication. For some reason, he is using your CTx as a guide instead of your DEXA results which I think is highly unusual.
In the absence of declining BMD and as you are still only osteopenic, I can't see any requirement for medication. These meds can have unpleasant side effects if used in the long term. Both the oral, but more so the IV, drugs have been associated with osteonecrosis of the jaw and atypical femoral fractures, not to mention a whole lot of minor side effects which are usually reversible when the meds are stopped. The reason for taking medication is to avoid fracturing - and you don't appear to be at high risk of this. You also don't mention having had a fragility fracture which is usually the trigger for treatment. You might like to run your DEXA results through the FRAX tool sheffield.ac.uk/FRAX/tool.a... which should give you an indication of your fracture risk. Don't forget that eg. a 10% chance of fracturing over the next 10 years conversely means you have a 90% chance of not fracturing!
If I were you, I would reconsider any further treatment and maintain or increase your level of weight-bearing exercise. Take the supplements I mentioned in my previous post and see how things are at your next DEXA scan. This video by Dr Berry on reversing bone loss naturally might be helpful to you healthunlocked.com/boneheal...
Thanks, Arcadia10. I have the same hesitations about taking any more meds at this point. I have not had any fractures and running my numbers through the FRAX tool was similar to my last DEXA report....less than 10% fracture risk.
I have found information about adding collegen to my diet either through bone broth, fatty meats (probably not for me) or a powder supplement. I'm leaning toward that regimen and seeing what happens at my next DEXA test mid next year. I'll also re-test C-Telopeptide in several months to see if that changes. The video was very informative, too. So nice to see an MD talk about diet and exercise as viable solutions
I was diagnosed at 50. My lumbar t-score was -3.9 and my hips were both around -3.1. I took alendronate for 1.5 years, with little improvement but at least no decline in my t-scores and I stopped taking it because of digestive tract issues. Unfortunately my endocrinologist didn’t test any of my bone turnover markers prior to pushing meds so I have no baseline and because he failed to look at my full DEXAs from 2019 and 2021 so he misinterpreted a correction on my DEXA as a gain in bone density and jumped to the conclusion that that alendronate had worked and he the. prescribed a zoledronic acid infusion, which I reluctantly had in November 2021.
I had no major issues with the infusion (at least not yet).
Since having the infusion I learned through my own research how much my endocrinologist is missing and not telling me. I had to fight with the imaging facility to get my full DEXA reports from 2019 and 2021 and the ancillary data. When I finally had it in hand, March 2022, on the report it says that I should be checked for secondary causes of osteoporosis, which my endocrinologist did not do.
My next DEXA is currently scheduled for this November. I want to have it done approximately 1 year after the infusion so I
can see if the infusion “helped” but I have made lots of other changes, diet, supplements, joined gym, etc. so if there is an improvement, I will not be able to say exactly what caused it.
If my numbers were as good as yours, and if you aren’t fracturing, I wouldn’t have the infusion, at least not yet. You might be able to tweak a few things and maintain your current BMD.
If you want a natural approach check out Osteostrong.me and go to BetterBones.com and search for Cindi’s story.
Also, HRT (hormone replacement therapy) works for some women. It’s my understanding that HRT suppresses bone turnover and can be monitored to see if it is working via bone turnover markers tests.
After having had the zoledronic acid infusion, I’ve read that bisphosphonates not only interfere with osteoclasts but that the also interfere with osteoblasts. I’m hoping that this isn’t always the case, because I was really hoping to work on improving my bones naturally, and it’s just one more thing my endocrinologist failed to mention.
Thank you FearFracture. I checked out Cindi's story and think the increased weight bearing exercises (using heavier weights!) is a good idea. I'll keep the "Food for Health" page for future reference. As my response to Arcadia10 shows, I'm going to rethink an IV med at this time and work on some more natural solutions. Best to you.
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Reaction to AA and now to Risedronate
fragile spine and multiple fractures
Information from your doctor
Giving myself a month's holiday from bisphosphonates
