How long to wait before re-testing bone markers

I would want bone markers at the start of a medication and then again three month in. The difference will indicate whether the medication is working. If your plan is to stay on the medication for a year, you might test again after 6 months provided you have a 10 to 20% increase in P1NP with an anabolic and decrease in P1NP and CTX with bisphosphonates and Prolia.
These need to be early morning fasting serum draws. P1NP is a reliable marker. CTX fluctuates with time of day, prior exercise and food consumption.
I want bone markers every three months because of the concept that the effect of Forteo might be best maintained by a switch to a bisphosphonate every three months. I'm using the markers to determine treatment.
There are other bone markers, some urine, that are equally useful.
Baguette, it is so good to hear of your PCP yielding to your request. But even more exciting that you are taking control of your health.

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Thanks for your encouragement!

I am not on a bone medication now. I was told I had severe OP (-3.8 for the worst vertebra). As with many others, insurance nixed the anabolic drugs for me. I can't take bisphosonate pills/capsules due to GERD, besides which studies have said that taking that kind of drug before the anabolic undercuts the potential full benefit of the anabolic drug. So for now I am not taking a med.

I am curious whether stopping the PPIs is helping my bones get back on track. That's why I was thinking about a re-test but don't know if six months is enough time for a comparison (without taking a drug).

BTW, I saw another PCP for a second opinion, and again that provider knew nothing about bone marker tests, and expressed no desire to learn. Very frustrating! So snaps to my first PCP, who also has no interest in bone marker tests but at least "humored" me by ordering them.

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You've figured out this use for bone markers, very clever. I'm impressed. I would repeat the bone markers now.
With -3.8 in the vertebra, you are presently at risk for fracture. If you fracture, your life will change in ways you not only can't imagine, but would never agree to.
A good endocrinologist would fight the insurance denial, but you might be better off financially with insurance refusal. A PCP generally doesn't have the experience to challenge insurance denials successfully
https://therxadvocates.com/ https://www.lillycares.com/assets/pdf/lilly_cares_application.pdf
I suggest Forteo because I'm so happy with the drug. Tymlos would be my second choice.
Stopping the PPIs was a good move, but it won't rescue you. Bone building is slow without the anabolic drugs. And (I think) even the injectable bisphosphonates are too slow.
If you decide against the pharmaceuticals, you'll know whether stopping the PPIs was helpful.
And if you are able to get help with the cost, those same bone markers will serve as a measurement for the success of the medication.
You might consider finding an endocrinologist, but you have a prescribing doctor for now. I would take the fastest route to an anabolic medication.

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Thanks for your perspective and kind words. I will look further into your link, but my experience so far is that the pharma assistance programs do not cover people on Medicare.

I did see an endocrinologist who bills herself now as a functional medicine doctor. She was of no help, proclaiming I did not have OP at all because my T scores were decent. She doesn't take Medicare or commercial insurance, so that was a very expensive appointment to hear a doctor re-define OP!

Like many people with medical conditions I find myself spending a lot time, energy and money doctor shopping. I am hopeful that having the REMS test will make decisioning easier. Either it will confirm the OP diagnosis, or will find I am not as bad off as I thought. I am going to see Dr. Bush in NC, and he has worked a lot with OP patients the last few years. My guess is I would have a better chance of getting the meds I need .... if I need them ... thru him. He is an orthopedist.

I am not too clever! I knew enough at the start of this journey to sign onto support groups like this one, and learned a lot from people like you. I also learned a lot reading Dr. McCormick's book on OP.

I have fallen three times since the DX, including one time straight on my butt and that hurt! But x-rays confirmed no fracture. That is why I am not certain that my DEXA scan tells the full story, and that the REMS ultrasound may provide better context.

I appreciate your saying to get the comparison test. Thank you again for sharing your perspective.

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Radius Assist for Tymlos is available to Medicare recipients who meet the following requirements:

To be eligible for Radius Assist as Medicare beneficiaries, patients must not:

be enrolled in Medicaid, Tricare, Veterans Health Administration, or Indian Health Service benefit programs;
be eligible for full Low-Income Subsidy (LIS) from the Social Security Administration;
and Patients in NY, PA, or WI must not be eligible for the State Pharmacy Assistance Programs

There are income based eligibility criteria as well.

Radius Assist link: https://radiuspharm.com/radius-assist/

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Thanks for your perspective and kind words. I will look further into your link, but my experience so far is that the pharma assistance programs do not cover people on Medicare.

I did see an endocrinologist who bills herself now as a functional medicine doctor. She was of no help, proclaiming I did not have OP at all because my T scores were decent. She doesn't take Medicare or commercial insurance, so that was a very expensive appointment to hear a doctor re-define OP!

Like many people with medical conditions I find myself spending a lot time, energy and money doctor shopping. I am hopeful that having the REMS test will make decisioning easier. Either it will confirm the OP diagnosis, or will find I am not as bad off as I thought. I am going to see Dr. Bush in NC, and he has worked a lot with OP patients the last few years. My guess is I would have a better chance of getting the meds I need .... if I need them ... thru him. He is an orthopedist.

I am not too clever! I knew enough at the start of this journey to sign onto support groups like this one, and learned a lot from people like you. I also learned a lot reading Dr. McCormick's book on OP.

I have fallen three times since the DX, including one time straight on my butt and that hurt! But x-rays confirmed no fracture. That is why I am not certain that my DEXA scan tells the full story, and that the REMS ultrasound may provide better context.

I appreciate your saying to get the comparison test. Thank you again for sharing your perspective.

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