'Step' requirement for meds and Tymlos

Yeah, just from the research I don't like all of the complications with Evenity, I also thought dead end. I hadn't come across that info about about spine/hip effectiveness. Interesting. So many reasons to want a PTH. And so good that you're tolerating the Forteos so well! I do sem to hear that most often for anabolics in here. I'll just have to see if my two PAs (ortho and ortho/endo) or the physicians that they work under 1. approve themselves 2. can get Medicare/QMB to pay for it. No more appts with specialists at all until Feb but the Ortho PA is very responsive to texts in the portal - hopefully she responds to my brief inquiry about that tomorrow. I also have a spine fracture, probably a few years old. Hoping I get to be an exception to the draconian insistence on the typical 'steps'. If not... I dunno. And I don't know if I'll ever be able to see a physician specialist - the Hopkins clinics relies heavily on PAs. That might actually be best - they tend to take time, listen well and be more receptive in general. But it's the doc behind the scenes who actually has to press for exceptions I think. Trying just to breathe and be patient in the various limbos. Thanks so much!!!

@gently Yeah, I've researched the meds pretty exhaustively (one way to deal with massive anxiety, heh) and it seems clear to me that that's correct. I'm in the Hopkins system and so far it's been PA's - I actually tend to prefer them. I have an appt. with an endocrinology PA in February and I'll see if she agrees with that and if so if she'll at least try to get Medicare/Medicaid QMB (dual coverage) to pay for it. No reflux but I do have jaw issues and need bone replacement - that might also help toward indicating an anabolic, though I intend to get all of that taken care of first. Medicaid likes generics and there's no generic for anabolics I think, so it's $$ also. How well did you tolerate Forteo? Thanks so much for swift reply, it's all truly complicated and scary.

It's awful - I was a hospice therapist for years (Retired LCSW) and had my own game plan all worked out - hospice pts are largely dying of CA. Somehow never thought about getting hit with something that could lead to sustained excruciating pain that won't kill you (in my case a hip fracture), with the only recourse (like 50% or so prevention with with Bisphosphonate) being a medication that many, many people aren't compliant with because of horrible side effect. I like the sound of Tymlos because the success rate is way higher, and the possible side effects sound nasty but not as frightening. It's been an awful couple of weeks but it helps to work hard to try to get a clear and informed picture, and great to find a support group here. I try to correct for negative bias here because forums are going to attract largely people trying to cope with bad outcomes, but it's also true that those are under-reported and under-researched in the main medical sources. Anyway, thanks, it's exhausting. I'm also suddenly afraid to move, just when I want to step up safe exercises and take more walks, and it's comforting to know that this is not a weird reaction. 'What if I fall? What if I bump against something or just make a wrong move?" Ugh.

@beccac
the jaw issues should clinch the recommendation for an anabolic. The Hopkins endocrinologist might suggest Tymlos or Evenity over Forteo. Evenity has the risk of osteonecrosis, and the follow up medication is usually Prolia or Reclast. So it seems kind of like a dead end road to me, but if your -4 in the hip looks likely to fracture. Evenity would be the fastest way to give it support. Tymlos is thought to work better in the hip than Forteo. Forteo giving the advantage in the spine.
I'm having the easiest time with Forteo--no side effects, a little slow on the bone density increases. But I'm more eager for the structural changes which are only known with the PTH medications.
Those of us with massive anxiety have the advantage in gathering massive information Good work. I do wish you were starting medication now. Any chance of getting the PA to start the work of getting approval for an anabolic.

@beccac
Doesn’t forte o have a generic now?

@gently
I was told that some oral surgeons use Tymlos because it builds bone without the ONJ issue.

I have started Tymlos about 7 weeks ago and have no side effects. My doctor put me on due to Commpression fractures. This came about of no warning for me as I very healthy. I was very scared at first as well, as do not take any other medications.

I have started Tymlos about 7 weeks ago and have no side effects. My doctor put me on due to Commpression fractures. This came about of no warning for me as I very healthy. I was very scared at first as well, as do not take any other medications.