Unexpectedly off Tymlos last 28 days- seeking suggestions!

Annie208,
you don't have a problem. You don't need the Reclast infusion and you can tread water for the next 9 months. You might take a mild oral bisphosphonate for the one and a half months ? after finishing Tymlos. Or you could take Evenity for six months after finishing Tymlos. Or you could just tread.
The only thing to look out for is another kidney stone. Magnesium especially magnesium orotate binds with oxalate in the large intestine preventing it from adhering to the calcium and forming the crystals that become stones. You'd best be attentive about hydration.
I would love to see bone markers for you now and then again in one month.
You might just tell your doctor that you've restarted Tymlos, but that you'd like to proceed with approval for Evenity.
Cheers

I developed a kidney stone on Tymlos as well. It took a long time for the kidney stone to be diagnosed and was an awful experience. I stopped the Tymlos on my own as well. I have never doubted my decision to stop the Tymlos, and I would never go back on it. It just isn't a consideration for me. I haven't taken any osteoporosis meds since then - that was enough for me. You need to make the decision that you are comfortable with - I wouldn't do it without medical advice though. And reusing the pens (if that is what you are thinking about doing) is not a good idea.

A few thoughts that might be useful to run by your endo,

Near-complete Tymlos course + recent kidney stone: the label flags hypercalciuria/urolithiasis and suggests urine calcium monitoring in relevant cases. Worth confirming whether finishing the remaining pens a good move

Whether HRT alone could work as the follow-up antiresorptive. CTX +/- P1NP could add useful info here, though you mentioned your endo doesn’t use BTMs. According to the literature, estrogen reaches its maximal effect on serum CTX after 6–9 months

If Evenity is next, the bridging/transition approach in the meantime (some observational data suggest it can matter)

Any implications of your total hip replacement for medication choice or timing, worth checking with both endo and ortho

Wishing you clarity as you decide on next steps.

A steady had at the tiller-- thanks, Mablin.

Why not call his office and speak with someone

Perhaps you are maintaining your bone density gains with your hrt. There is someone on this site who has. Can you get CTX and P1NP testing to see if your maintaining your Tymlos gains? That is my plan. I started hrt a few months before starting Tymlos and I'm making great gains. I'm hoping the hrt will hold my gains and skip reclast unless absolutely necessary.

Thanks @mayblin, @gently, @lbrown742 and everyone -- I am OP (the unfortunate 64 yr old Tymlos user who turned up with a giant kidney stone July 4 after completing 20 months of Tymlos, couldn't pass it, and had surgery to remove it and a few other tiny ones in one kidney on July 14).

I just had the follow-up with my endocrine doc yesterday (I have been dying for this appointment because I'm at the crossroads of osteoporosis, kidney stone adventures and an esophageal autoimmune disease called EoE that has kept me from eating much the last 6 months up till I went on a low dose PPI every other day recently).

He wants me to stay off Tymlos till we can see the results of my 24-hour urine calcium test to see if I'm spilling calcium out that way (which would explain why I formed a stone if I do have high urine calcium). I have several unopened boxes of Tymlos in my fridge that have 2+ years till their use-by dates and I'd like to start another bone-building era that includes their use in the future.

He gave me HRT 6 months ago at my request, apparently not realizing that I had asked for it for its bone-preserving qualities and not "menopausal symptoms." So he acted confused that I was trying to explore using HRT as my follow-up to lock in my Tymlos gains. He didn't seem to remember (or notice in my chart) that I'm quite reluctant to do an antiresorptive any time soon and I don't want to do Prolia till my 80's (because he said we should do Reclast or Prolia).

We started running out of time and I could tell he was worried about his next appointments (he had run 55 minutes late getting to me in the exam room, unfortunately). So I hurried and asked for a serum E2 to see how I'm absorbing my estrogen patch (and to see if my E2 numbers are up in the 70-100 range that allegedly indicates the possibility of bone growth rather than mere bone density retention). I don't think he agrees that he should consider calling my HRT my "lock-in" step even if my estrogen is nice and high from my .05 patches, but he was in a hurry and trying to be kind so he hurried and put the serum E2 order in and I'll seek to get increased to a .075 patch if my serum E2 levels are quite low and unlikely to be doing much for actual bone growth.

When he was leaving and had his hand on the doorknob, he did say he'd be open to my doing just one dose of Reclast for a quick lock-in since I indicated I really wanted to keep my bones receptive to future anabolic bone-building in the future. He didn't seem to agree, but rather to be willing to humor/honor my preferences, but (in my experience) if I can show up with some studies at our next appointment (and if he hasn't been running late) it's not unlikely that he'll take in and consider what I'm shooting for and why. Last of all, he hinted that he MIGHT be open to future anabolic use because he concluded by saying, "after all, while antiresorptives do MUTE the effectiveness of anabolics, they don't fully neutralize their use again in the future." POST NOTE: He doesn't use bone markers at all --likely because none of the insurance companies in our state pay for them.

@annie208, I'm sorry to hear about the challenges you've been facing and the decision you have to make given everything that's happened. Which route are you leaning toward?

There's discussion about using HRT as a followup after an anabolic. Because of existing knowledge gap, there are uncertainties and potential risks such as losing BMD or not getting adequate fracture protection. If you are interested in reading the discussion: https://connect.mayoclinic.org/comment/1643074/ - you may need to scroll up or down to see the full convo.

Also, just in case you didn't know, there is a self-order, self-pay option for BTMs if you're interested in testing. There are threads that discuss this option and the detailed prep required before the lab.

Thanks, @mayblin . I appreciate that thread and checking in on it is one of the main reasons that I come back on here several times a month!

My primary hope/wish/goal is to
A) safely make it to May/June 2027, when I will transition to traditional Medicare and can travel to and affiliate with an as-yet unidentified, cutting edge clinic (or practitioner within a clinic) who is enthusiastically following the evidence on anabolic use beyond 24 months. And

B) Hold onto my gains with as little exposure to antiresorptives as possible.

If the serum E2 I've achieved on 6 months of .05 patches comes back happily high (80-100?), I will probably cobble together a proposed plan to do self-pay bone markers and--if those ratios look good-- get organized to pitch him hard on using HRT as my only lock-in-the-gains follow-up till I start Medicare and can go somewhere cutting edge.

In the meantime, I had a HUGE blind-spot and realized I've been popping up to 6 (!) tums a day for the last few years as my gastric condition (EoE) has been rearing its head. I'm so annoyed that I treated them like innocuous pieces of gum. It's a little rare to have one's first stone at 64 and my urologist's office thinks the tums (and being VERY dehydrated the last year) did the trick and can be course-corrected. I am not so spooked about that kidney stone that I want to automatically throw in the towel on more anabolic medications--although I'm concerned and am eager to see what my 24 hour urine collection shows next week.

Thanks again to you and all! I know you can't give medical advice, but if you were getting self-pay bone markers in my situation (20 months of Tymlos complete and off for almost 6 weeks, on "nothing"), what intervals of bone marker testing would you do and what ratios would you look for?

@annie208, those Tums might’ve been part of the problem😬 Hopefully the 24hr urine comes back normal!

When I came off Forteo, I got a BTM lab right away to establish a “new baseline” - CTX was pretty high at 800. Since I don’t have a pre-treatment number to compare it with and had no idea how CTX would trend, I rechecked at 1mo, 3mo, and 6mo.