Significant osteoporosis: I need a bone plan
60 y/o , fit and active (I thought) but my first bone scan showed osteoporosis in spine (-3.3). Want to start Evenity, Tyblos, or Forteo. Its really the first health issue I've had in my life, and I'm kind of stumped. How can I find reliable third party research into their relative risks & efficacy -- only research I can find online is done by the companies themselves.
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Hi @windyshores. Thank you, I appreciate your reply. This was a serum NTX. The reference range is 6.2 - 19.0. My previous result in 8/23 after Evenity was 4.8. I don't know if my current endo ordered a CTX, so I've messaged him. Hopefully he has ordered it or if not will do so if I request it. From what I've read, the serum NTX is not a reliable source to evaluate resorption, and my previous metabolic bone specialist didn't utilize it.
@hollygs thank you for your info. Since many of us don't run into an NTX, it was helpful. I wonder- ask your doctor- if Tymlos raises the NTX well above normal-? Curious to hear what your doctor says and what your CTX is if it was done.
I have been told that Evenity raises P1NP and lowers CTX so it makes sense that the NTX was below reference range for Evenity. So maybe you are comparing a lowered value on Evenity with a raised value on Tymlos. Let us know what your doctor says!
Hello Holly,
The bone health specialist I was seeing gave up on my case. The last NTX he did was back up to 31.2. on 1/14/2022. I have a new bone health doctor who is a woman and hopefully she will be more on the ball. I'm still dealing with osteopenia and had a DEXA scan in May so at least I'm holding onto osteopenia and not back to osteoporosis. My stomach is beyond tolerating any of the oral meds and I didn't want to start the Tymlos after what I went through with it again so trying to walk more with an another failed thoracic and cervical spine surgery in January, 2023 and taking calcium and vitamin D supplements. Thank you for your message since the N-telopeptide concern is something that I had not brought up with the new doc. I have seen more journal articles pertaining to the NTX but didn't follow them since it had been dismissed.
I wish you the best of luck in finding answers with your new endo. I have found Medscape to be a good source of information. Keep up your spirits and we'll hope you find the solution.
@windyshores Tymlos is not expected to raise serum NTX but rather the opposite, but there are many factors that can affect the results: prior treatment, circadian rhythm, inflammation, other disease processes etc. Urine NTX is considered more reliable, but neither is ideal. CTX seems to be the standard to date. Altogether, many doctors consider these tests to be inconclusive but patients often request them for reassurance. My NTX below reference post Evenity was anticipated and hoped for. I'll let you know what I find out, but tbh my current endo is not a reliable source of information.
@suzfuse46 Thank you so much for your kind reply. I'm so sorry you've had such a rough go of it, but I'm very glad to hear that you are holding onto osteopenia. May your healing continue. I've read up a bit regarding elevated serum NTX secondary to Tymlos treatment, but ultimately it seems that this test is unreliable and CTX is preferred. As you well know, the rabbit holes to go down are endless, so I will wait until I have a new doctor to explore this subject further. I'm very grateful for your support and encouragement and sending you the same. May you have a magical holiday season ahead, and keep your spirits up as well. We've got this!
@hollygs for my education, can you explain why Tymlos raises CTX but lowers NTX? I thought they would be the same. Can you direct me to a source? I thought that Evenity lowered it and Forteo/Tymlos would raise it but I have no idea how much.
My doctor doesn't do any blood bone marker tests but I have had them done by PCP and interpreted by McCormick. They haven't reflected what is actually going on according to the DEXA but my timing may have been off in terms of how long treatment had been doing on. All very confusing.
@windyshores I couldn't recall the exact source(s) I found, but in order to answer your question, I just googled "why does tymlos raise ctx and lower ntx" and the first thing that popped up is an AI overview that also contains several links. It's excellent! It's not possible to link it, so let me know if you have access. If not, I can copy the main text and send you the referenced links. I bet if you pose your question here, you'll get some interesting responses.
@hollygs well thanks to you I learned something. This question about CTX and NTX is quite complicated. They do move in the same direction, from what I can understand, but the NYX increase is transient(up for 24 hours) and followed by a decrease (14 days). This linked study also says CTX moves "in the same direction." https://pmc.ncbi.nlm.nih.gov/articles/PMC3536955/
Over the years I have always read that Forteo and Tymlos raise CTX and P1NP. Apparently that is an oversimplification.
There isn't a whole lot on NTX using my browser!
I am going to ask my doctor about this. This info if reliable seems very important since we are looking at guidance from bone markers. This may be one reason my doctor doesn't use them and said that an entire conference could focus on them. Chances are the timeline for increase and decrease varies from individual to individual too, along with all the other factors that we know influence CTX.
@windyshores Oh yes, it's extremely complex! I just tried to attach a link for you here, but I got a notification that newly registered members aren't allowed to do so. I hope your conversation with your doctor will be fruitful.
@hollygs, you're right. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. You will be able to add URLs to your posts in a few days. Allow me to add the link to the Mayo article that you wanted to share with @windyshores
- Beyond bone density: Checking the health of your bone https://mcpress.mayoclinic.org/living-well/beyond-bone-density-checking-the-health-of-your-bones/