Tymlos for life? My endo is telling me this

Very interesting. I see you have to fast and stop calcium and the collagen etc you mentioned and have the blood drawn in the morning. That's valuable information. Thank you.

I have not a clue. I'm listening to the Sante Fe symposium about OP and the speaker said at some point the anabolic effect of forteo/tymlos on bone metabolism is going to be controled by the bone and will not build itself forever. bone markers should be tracked as an index of biolgical effectiveness. (wow I know so much more than I did yesterday!)

zygote,
the ideal is for the bone to rebuild forever because the bone breaks down forever. The balance between osteoclasts and osteoblasts is what keeps bones free of fissures and strong.

The speakers don't address the significance of CTX the bone marker for bone dissolution.

In the open mic session it was difficult to determine who was speaking, but several suggestions were made.
Run a prior P1NP for Forteo and again at three months
Run a prior P1NP for Tymlos and again at 1 month.
Run a prior P1NP for Rosozumab and again at 2 weeks if at all--not meaningful for treatment decision.
If the P1NP is below baseline Forteo you might double the Forteo (never heard that before)
If the P1NPs are below baseline at the end of the 18 months or two years, switch medications. Risidronate suggested.
There aren't studies so none of this is supported by more than the thinking of whoever is speaking. There was neither disagreement, nor agreement, but a caution to be careful about why we are doing the bone markers, and what prior treatment was given to the patient because prior treatment, say with bisphophonates, will delay response to anabolics in some cases up to six months. It is at 16:30 on the open mic.

When taking CTX the timing of the blood draw must be as early as possible - as soon as the lab opens. CTX has a natural spike and decline throughtout the day. It is highest somewhere in the 3-5 am timeframe and then declines throughout the day and then builds again.. Ive heard different estimations. Therefore take it at 6am if thats when youe lab opens and the next time you take it, arrange it to be the same time. CTX can drop substantially throughout the day and you will not get an accurate comparison.
I have a current range of 535 at about 6am. Within 2 weeks of a CTX, I had a set of labs done by another doc that could not be done until 9;15am due to a restriction. I did not know a CTX was included in those new labs. MY result was 430 - but that was 3 hours after my 'baseline; CTX ( 6am ) so it was not menaingful. This may be one reason some doc do not use BTM - becasue they are specific. I think however, if the patient is given clear instructions,we will follow them.
On another point, I have had 5 - 24 hour urine c calcium tests done. ONly my last doc told me to stop supplemental calcium 24r prior, as additional calcium will sque results.. It makes sense there will be spillage of excess calcium if taking supplements - but I wasnt given the insturction. I know so much more than when I began, I hope anything I learned may help others.

Thank you for letting me know that the CTX should be done early am and at the same time. That makes sense.
I have had probably 10 -24 hour urine and was never told to stop calcium. If I were on a daily supplement of calcium, (in my opinion IMO) it doesn't make sense to me to stop calcium supplements for the test, then resume them after the test. That would actualy skew the results since it would not be a true picture of what my daily excretion of calcium actually is .

I am only 30 minutes into the first speaker. I have to keep looking things up as he talks and go back to relisten so I understand what he is saying . It's all very informative. Thanks for the update on open mike....

yes, I saw that! I'm not hep on injecting for life, but I haven't had a fracture of the spine or hip yet...maybe I would be more excited about a life of injections if I had/ or if I do fracture....

@hardingv what did you end up doing about the last 3 months? skip? pay out of pocket? And what drug did you begin after stoping the tymlos?

Urine Calcium 'normal range' was done with praticipants not taking calcium supplements. So if you are trying to establish what you 'normal range' is, this cannot be done while taking supplementation.
If you know your normal range and there is some reason that urine cal is being evaluted while on supplemneation - then that is needed for your case.

My urine cal was high ( while on calcium supplmentation and due to High Vit D). To evaluate what was normal for me I was off calcium and off Vit D. When VIt D normalized, i continued to retest 24 urnice cal off cal supplementation to make sure my range fell into normal, HOpe this makes sense. Urine cal normal range cannot be estblished while on cal supplementation - if that is what is being checked. Perhaps are there some kindney issues that are follwoed while on supplementation to make sure excretion is not too high or toxic - but that is a special evalution.

I was going to appeal, but my endo said it didn't make much difference since effectiveness drops the last few months. Besides, my original endo gave me 2 samples at the beginning when I was having trouble getting Accredo to fill the RX on a timely basis. So in the end I was really short just 1 month.

I then did Reclast. I followed the suggestions about hydration and Tylenol, and fortunately had minimal effects