What to do after Tymlos (complicated)
Hi to all,
In January I will have completed the two year maximum time on Tymlos, which has worked very well for me (will do DEXA in February). My problem is what to do next.
My endocrinologist wants me to go back on Prolia, which I took for a couple of years a while back with no side effects and moderate gains. My concern is that I have had endless problems with my teeth since I was in my thirties (had the latest extraction yesterday), and all the options, from Reclast to Fosamax (which I can't take because it does awful things to my GERD) to Prolia (which I know this forum is reallhy down on), carry a small but real risk of jaw necrosis, esp for people with a history of dental problems (that's me!).
I can't take Evenity (cardiologist says not to). So I have no idea what to do. Endo says there are no options that don't carry a risk of necrosis. She's a smart lady and is fairly prominent in the field of osteoporosis; she knows what she's talking about. Does anyone have any thoughts?
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I am about to go on either Tymlos or Forteo. I would like to also do Hormone Replacement Therapy simultaneously and then after my time on Tymlos or Forteo just stay on the hormone replacements. Anyone do this? I am 15 years post menopause.
aynewyorker, see if she'll prescribe Forteo. If not, I would take a low dose 3 to 4 mg Reclast, with slow 1 hour infusion. The only meds without the risk of necrosis are Forteo and Tymlos. The risk with Reclast is with long term use, unlike Evenity or Prolia.
You went from Prolia to Tymlos with good results? Was there gerd-ridden Fosamax in between.
I'm really down on Prolia, unless you have metastatic to the bone cancer. Then I'm all for it even if you do lose your teeth.
You have many concerns that need to be addressed as least damaging to your overall health.
I dont know your age; Prolia can be a thought of as a life safer if you in your late 80's and will be taking the drug for the rest of your life.
As for Evenity, Is it worth a second opinion with another cardiologist ? Im not sure if you have conditions that make you vulnerable to cardio issues ( weight, diabetes, stress, history of heart or stroke high homocysteine etc) or if your cardio person is just being over cautious. There are real reasons not to take Evenity - so you want to be sure what the reasona are as Evenity is a good medicine if you need more bone building.
If you just need bone maintenance, then its best to look at other options.
Tymlos must be follwed up - I was on tymlos and given the option of Actonel or Evista. Both stay in the body the least amount of time- so if there is a problem you can get out of it quickly. I was on actonel only 6 weeks to achieve the reduced CTX levels - actually my levels plumitted which may be due to my highly responsive system. Soon after I transitioned to Evenity becasue I needed cortical bone bulding support. If I have to go on a bisphospante again , it would be half dose.
I suggest you take the least strong drug to achieve whatever Bone amintenance and bone marker results your endo is trying to achieve with you. Reclast is very strong - some have take 1/3-4 - 1/3 dose and doen well... So continue to do your homework. Sending postive energy that you will find the path best suiteed to your needs.
Since you can’t take oral bisphosphonates, the main choices are IV Reclast and Prolia, with raloxifene and HRT as other possibilities. Raloxifene and HRT are easier to stop and don’t overly suppress bone remodeling, but their fracture protection is much weaker than Reclast or Prolia. That might not be the best fit if your FRAX risk is still on the higher side, and each comes with its own risk profiles.
On the other hand, Prolia carries the rebound issue - and if dental problems ever forced you to stop, you’d still need to switch to a bisphosphonate - so Reclast may end up being the more workable choice imo. You could ask your endo whether tracking bone turnover markers would make sense, so infusions could be spaced out or doses adjusted. And later on, there’s still the option of cycling back to an anabolic if needed - like Forteo, which doesn’t carry the 2-year cap, or Tymlos again if that limit is ever lifted.
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!!!
Gee, I had no idea my post would be so long! Apologies to anyone who wades through it.
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.
@jeanneh, did your physician mention whether adding HRT to Forteo or Tymlos therapy would provide any additional bone benefits?
@jeanneh, I am currently on a half dose of Tymlos and a Menostar bioidentical estrogen patch. I am 20 years past menopause. I have only been on the patch for 6 weeks and am having acid reflux issues. I have had a hysterectomy, but still have my ovaries and cervix. My functional physician wants me to take bioidentical progesterone as well, but I have had trouble adjusting to that. I had terrible constipation with the cream and capsule. I plan to try a half dose of the half dose capsule as soon as my reflux quiets down. My plan is to take the low dose of Tymlos and BHRT for a while, then just stay on the hormones. I am so sensitive to medications! I am even having trouble with HRT! The first functional physician insists on progesterone, even though I don't have a uterus. I just had a second opinion from another functional physician. She also thinks it's important to have the hormones balanced.
@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.