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What to do after Tymlos (complicated)
Osteoporosis & Bone Health | Last Active: 6 days ago | Replies (17)Comment receiving replies
Hello to all and thanks for the responses.
For the record, I'll be 79 in January. My overall health is quite good: heart fine except for mild superventricular tachycardia; blood glucose, A1C, kidney function all good. Cholesterol (thanks to a statin) low; blood pressure low (partly the metoprolol I take for the arrhythmia, partly good genes--my diabetic, overweight father had BP that rarely exceeded 110/70). Metabolic panel is a thing of beauty. Like anyone my age, I do have a history that has implications for dealing with the osteoporosis, including a massive DVT and the cardiac arrhythmia.
I have no experience with HRT. When I had a hysterectomy way way back in 1998, my doctor and I agreed not to do HRT because my mother died young of breast cancer and it was considered too risky for me. So I can't offer anything on that.
Gently, yes, I went from Prolia to Tymlos. I started Tymlos in January 2024. In January 2022 the T-score for my spine was -3.2; in Feb 2023 it was -3.3; in Feb 2024 it was -3.2; and in Feb 2025 it was -2.6. I'll have another scan in February 2026. My P1NP last month was 166 ng/mL; I believe that's a pretty good response to Tymlos.
Unfortunately, Mayblin, I can't take Evista (raloxifene). After the hysterectomy, my gyn prescribed it, and I took it for about six years. Then I developed a massive blood clot in the popliteal vein behind my left knee, which in turn blocked four veins in my calf. This was no picnic. Needless to say, this experience rules out that drug.
Gently, can I ask why you're so strongly opposed to Prolia? Is it the rebound issue or more than that?
I can ask about Forteo, but part of my concern about that is insurance issues. I had trouble finding a company that would cover Tymlos, which is also very expensive, but eventually did. I can look into Forteo, as well.
I've been reluctant to consider Reclast because I've read so many horror stories about the side effects. I will certainly bring up the question of taking it at a lower dose and see what she thinks.
Dmshope, my cardio advised against Evenity because I have my ten-year history of SVT. It is well controlled by metoprolol and is not a big deal in and of itself, but it does predispose you to developing afib. He was quite clear that I should not go on Evenity, and I have to respect that.
I wish this weren't so complicated!!!
Replies to "Hello to all and thanks for the responses. For the record, I'll be 79 in January...."
@anewyorker
curious about what your spine t score was before Prolia in 2020 because from 22 to 24 you had no gain with Prolia. It amazes me that you had only 6 months of Fosamax followed by 4 months of nothing and had no rebound(except I would be blaming Prolia for the compression fracture).
Do you have t-scores for L 1 prior to the fracture.
Rebound certainly is, has been the cruelest part of Prolia. My opposition is because of its mechanism of action. It prevents existing bone from becoming stronger and from repairing itself. Prolia does prevent fractures by adding bone. Your body defies rebound, so my caution with your use of Prolia would be osteonecrosis. Unless your moderate gain was very moderate, then I would claim that the drug simply doesn't work for you. I have wondered if in individuals for whom Prolia is not effective at building bone, rebound doesn't occur.
Some doctors in California are prescribing Tymlos for longer than two years. The language on the insert has changed from restricted to advice that the medication be restricted to two years. The language change followed the lifting of the black box and is there because of a lack of information rather than information. Tymlos hasn't been followed for cancer risk for as long as Forteo. The expectation is that the language will be more similar to Forteo's in a few years.
Your response to Tymlos is quite good. I suspect you would have continued response. Maybe your doctor would agree with bone markers for safety. Are you having CTX markers.
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It definitely makes sense to rule out raloxifene and HRT, given your medical and family history.
That really narrows the focus to Prolia vs. Reclast, or possibly extending the use of a PTH analog. Usually, going from Prolia to Forteo or Tymlos isn’t advised - trial evidence shows it can lead to bone loss. But since you had Fosamax before, that might have changed how things played out when you came off Prolia. The question is whether that protection would hold if you went Prolia → forteo/tymlos again in the future.
With Reclast, the trade-off is that it will blunt future anabolics effects. That’s why monitoring bone turnover markers could be helpful - it might allow you to time or space out infusions or adjust dosage to better prepare potential future anabolic therapy.
Continuous use of a PTH analog could help maintain bone density, but it’s an expensive long-term strategy, and data on whether fracture reduction continues with ongoing therapy is limited. On top of that, it’s not clear if BMD improvements would keep going or plateau. There are also practical hurdles - whether your prescriber is comfortable continuing, and whether insurance would keep covering it (unless you can keep adjusting your plan). The biosimilar teriparatide is much more affordable. @gently is a valuable resource on navigating continuous PTH analog use.