Mixed results 1 year after Forteo: What are your thoughts?

here's another confusing article! here - correct me if I am incorrect it says that the P1NP numbers should be reduced, not increased! Ugh... I'm so confused! @awfultruth , @mayblin, @gently and @windyshores https://news.mayocliniclabs.com/2023/08/07/laboratory-testing-of-bone-turnover-markers/#:~:text=Bone%20turnover%20markers%20(BTM)&text=The%20most%20common%20bone%20resorption,measurable%20in%20urine%20and%20serum.

my endocrinologist is not in favor of these test @windyshores. I've come across info which might explain his ambivalence... they shouldn't be used to determine osteoporosis. However, they are good guides to effect treatment of the medications! On the other hand, he wants DEXAs. So that is next month with the software analysis.
YES - now, I seem to not have any side effects! I might be tired - I seem to take naps but maybe I'm just getting older. I don't know. My belly distension went away when I stopped injecting in the belly after about 2 - 3 weeks and I ordered the 32 x 4mm ultra fine nano injection tips. They work amazingly well. My legs were bruising with the others. I can see why the P1NP would be ineffective after stopping use of the medication. it really should be a marker of medication "ramping up" to effect a change of increased bone building/mass. I am still very confused about the word "remodeling." I would use it to describe BUILDING but I think its used to explain undesirable deterioration. For the life of me I can't read the literature and retain it. Congrats on your DEXAs! That's the important thing. They can't do my lumber or my hips. So they use the wrist which is not really helpful. So, I'll be eager to see what they come up with. I've heard some say they CAN use the lumbar regions around where I've had surgery... so we'll see!

@gently Wow that hits the nail on the head with just the title "Effects of Yearly Zoledronic Acid 5 mg on Bone Turnover Markers and Relation of PINP With Fracture Reduction in Postmenopausal Women With Osteoporosis ". Thanks, I'll have a look

I lost my post @loriesco so we are crossposting! The link you posted is about bisphosphonates, which have the opposite effect on CTX and P1NP vs Forteo and Tymlos, I believe. I forget, do you have McCormick's "Great Bones" or have you watched Dr. Ben Leder's youTube video "Combining and Sequencing Approaches to Osteoporosis?" My understanding is that your increase in P1NP is excellent, but confirm with your doctor. (Evenity raises it dramatically in the first month and then it declines quickly).

Let us know your DEXA. How many months will you have been on Tymlos when you have it?
Fingers crossed!

OMG - great share! totally explains why I can digest sheep/goat feta (mostly considered mediterranean) but can't digest cow feta!!! EVEN when the cow feta is "lactose free!" I never thought I had a casein intolerance but know I have lactose intolerance because I inherited THE gene mutation from both parents. Really great to know what I couldn't figure out!
I'd buy the feta at the middle east market. then one day I bought it at a big chain grocery. It said lactose free so I didn't think anything of it. Got the WORST cramping. Since then I stay away from American made cow feta (which Americans love to produce). I always knew that lactose was different from casein. I can eat very aged cheeses with zero problems - even if the cheese is from cows - I even buy cheese and keep it in the deli drawer for a year before eating. Never have a problem. But had problems with the cow feta! Now I just buy sheep and goat cheeses intuitively. Thank you @bboon55 !
"Sheep's milk contains A2 beta-casein, a type of casein protein that is easier to digest than the A1 beta-casein found in cow's milk. A2 beta-casein is also less inflammatory and closer to the proteins found in human breast milk, making it less likely to trigger allergies. Because of this, some say that sheep's milk is healthier than cow's milk and can be a good dairy alternative for people with sensitive stomachs.
Goat milk primarily contains A2 casein proteins, which are a type of beta-casein found in milk protein. In contrast, cow milk typically contains A1 casein proteins, though some cows do produce A2 milk. Goat milk's higher proportion of A2 casein compared to cow milk can affect the bioactive peptides that are hydrolyzed in the milk. "

okay YES - NOW I get it! I couldn't make sense of this. I told the dentist TYMLOS is NOT a biphosphonate yesterday. I don't think she believed me. 😉 She was worried about my tooth extraction and getting more wisdom teeth pulled if I needed it. I told her not to worry! I'll make a note and try to watch what you suggest. I'm getting busy with November's election stuff and I gave myself a concussion two weeks ago - so I'm dealing with PT now. Ugh. I'm getting better except for the neck whiplash. When I do something I do it right! thank you for having my back! 😉 god forbid my endo dr. might respond....

@loriesco I'm afraid I don't understand your first confusion. "Beta-crosslaps test results are normal when less than 300 pg/ml. Above 300 pg/ml indicates increased bone resorption. In this case, the patient may have osteoporosis, Paget's disease, hyperthyroidism, and hyperparathyroidism."
So if yours is 322 then it is outside of the most desired range and maybe indicates too much bone resorption (bone tearing down). So I read it as not great all the way thru.

Remember that with bone markers and with DXA scores it's best to observe trends. Ranges are of course important but following trends helps you to know whether results are likely accurate and how you are responding to whatever you are trying to do to help.

If your CTX of 322 was one year after a Reclast infusion you might guess that you need another infusion (or a different treatment). But what would be ideal would be to have CTX scores at baseline with Reclast and then at intervals. That way you could consider another infusion when you need it rather than when some abstract one size fits all schedule. I'm not suggesting you invest in time travel and redo all this, just pointing it out to help going forward. Though I do wish time travel was an option here.

Here's some notes I took from Lani Simpson that give an idea of this: "For Reclast judge when to repeat by ctx. If around 200 do not repeat, at 250 or 275 maybe repeat. "
This is assuming that it went down lower than 250 or so after the previous Reclast shot.
BTW some folks keep low CTX scores for 2 years or more and would quite likely not need another Reclast infusion until the CTX did rise to those levels.
I know you are past Reclast and into Evenity - I'm just putting this in to show how we all need to think about this (since many of our doctors are not thinking like this).

For P1NP my doc was delighted that my score nearly doubled from baseline to one month after my first Evenity shots. Unfortunately I don't have other markers and I'm almost done with Evenity. I'm getting my DXA two months early in order to help me figure out what to do next. Have to pay for it myself but it's no easy matter if you wait until 30 days after your last Evenity shot to get a DXA and then you have to immediately decide what to do next and get the doc to agree, and get it approved with insurance and get all the paperwork done etc. So I'm going to pay and hopefully have a smoother transition to the next med. It took me 5 months to get Evenity from the time I got the doc to agree to it. Hopefully I will have made good gains.

the way it was explained to me just now by @windyshores - was TYMLOS, because it is not a biphosphonate, has the opposite effect with the numbers. So the 49 to 90 was GOOD whereas if it was a biphosphonate it would be bad. And I guess my 322 over the 300 is also going in the correct direction. They have already told me I am not doing any reclast until I am off the Tymlos and then I do the reclast once a year for 3 years and then I'm done. (unless new research comes up). I can't do them together because it is not the protocol with the TYMLOS.
I just looked up Lani Simpson. I don't know about her but I am at UCSD a teaching hospital and they really know what they are doing there in the specialty departments. It was explained to me why I will be doing this as the protocol they are recommending. I am on board with it. I grill my endocrinologist and his assistants. Totally.
They work in a team - in a non profit - teaching other doctors to become tomorrow's doctors. I am on Medicare now (before I had military insurance) so I don't worry about the cost. I just make sure I get the BEST there is. I had to fight to get this protocol because its not the first line of medication. I also get to go to the head of the class as I am gluten and lactose-intolerant. (lactose and gluten-free meds are more expensive). Because of my many diagnoses I am always permitted (and willing) to get labs and tests if the doctor finds them helpful.

I have done the DEXAS for 15 years now but without the TBA software analysis - it is no longer helpful because they must test on my wrists. So I went back and forth and settled on UCSD to do the next DEXA. I just have to get in the back of the line is all. 😉

Dentists seem to think all bone meds are a problem! Tymlos can help with fracture healing, so who knows maybe it helps with extraction-? I guess you can't ask your dentist 🙂

@loriesco the relationship between P1NP and CTX is complicated. I may not have this right (ask your doctor) but my memory from "Great Bones" and Leder's video is that ideally the two get "uncoupled." As I remember bisphosphonates make both go down and Forteo?Tymlos make both go up. The ideal apparently is to have P1NP go up and CTX go down and there is an ideal "window" for this. (I don't have my copy of "Great Bones" with me but Leder gives a really good explanation of this on YouTube- "Combining and Sequencing Approaches to Osteoporosis." )Leder discusses doing 0-9 months Forteo and with Prolia coinciding for months 3-15 to get this effect and also says that Evenity does the same thing, though the P1NP does go down quickly and it isn't as potent an antiresorptive. I get confused too about "remodeling"! (Of course Prolia would then pose the risk of rebound, which Leder also discusses...)

UCSD hospital is the best! My kid used that hospital and I had my first afib episode treated there. So much research is done in San Diego and they are very progressive in their care. Good luck!