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

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@awfultruth

@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.

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Replies to "@loriesco I'm afraid I don't understand your first confusion. "Beta-crosslaps test results are normal when less..."

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. 😉