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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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Thanks to everyone for your thoughts.
Gently, you're going to be sorry you asked. I thought you raised some good points, so I went back and made a chart (it's the compulsive organizer in me) of both what meds I've been on and DEXA scores. You're quite right that I didn't improve on Prolia; the only med that's had an impact is the Tymlos (saints be praised).
I am totally bumfuzzled and without a clue as to what comes next. I really prefer to avoid Reclast, understand the concerns about Proolia, and don't see a perfect option. I will see what I can find out about Forteo as the only other viable option.
Here you go:
Treatment:
Raloxifene 60 mg daily from 1998 to 2006, discontinued due to blood clot
Alendronate 70 mg weekly from 2006 to 2010, discontinued due to duration of use with subsequent "drug holiday"
Denosumab 60 mg SC in February 2020, August 2020, March 2021, September 2021, March 2022, September 2022
Alendronate 70 mg weekly from March 2023 to October 2023 (discontinued due to GERD; compression fracture 10/23 after bad trip and fall)
Denosumab 60 mg SC in November 2023
Abaloparatide 80 mcg SC from January 2024 to present
DEXA spine T scores:
5/2010 -2.5 (after four years of Fosamax)
2/2020 -3.2
2/2021 -3.3
2/2022 -3.2
2/2023 -3.3
3/2024 -3.2 (not including L1 bec of compression fracture 10/2023)
2/2025 -2.6 (excluding L1)
Thanks so much for your help, everyone. I guess if there were a perfect option there would be no need for this forum. Maybe someday . . .
@anewyorker I was a fosamex failure. Bone density decreased over 1 1/2 years with 3 compression fractures. Now on Tymlos for one year with no further decease in hip and increased bone strength in Lumbar spine. Not sure what to do next year though after I will need to be off Tymlos. Similar problem to yours.
@anewyorker
so glad you asked.
The Fosamax may have saved you a fracture from 2010 to 2020 because it stays on your bone for ten years or so. Denosumab is not effective. You can't take Evenity. From your experience with Fosamax, Reclast probably won't increase your bone density. Tymlos really works for you.
If you have segmental spine measurements, I'd be curious to see the numbers, especially on L1, because I want to blame Prolia,
but really on each segment to see how effective Tymlos really has been.
Reclast is much stronger than Fosamax, so you may reconsider. But otherwise I don't see much of a choice. Forteo is more effective in the spine. but another year of Tymlos would probably be a good choice.
Would your prescribing doctor agree to another year or to Forteo
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1 Reaction@adam08 I feel your pain! There is no magic bullet, apparently.
First, a big thank you to everyone who has responded here. One thing I'm getting is that there is no magic bullet, no right answer, that every option has its drawbacks. Alas.
It does seem that my choice is to try to get another year on Tymlos or on Forteo or to switch to Prolia or Reclast. I continue to be concerned about the side effects and effectiveness of Reclast for me, given that I don't seem to have had much of a response to Fosamax when I took it for six years. I do understand the arguments against Prolia; OTOH, I at least maintained bone density, even if it didn't improve, so if Tymlos gets me to ostepenia, maybe that's not so bad. Given my age, my endo pretty much said I would just stay on Prolia indefinitely; guidelines now seem to say you can take it for 10 years.
Dr Google tells me that it's still not advised to use anabolics for more than two years over a lifetime. I gather that's changing? Can you point me to some research on this?
Gently, pls. don't take offense at this, but I"m wondering how you acquired your incredible expertise on osteoporosis. Clearly your knowledge is far deeper than mine and, I suspect, most people's. Are you in the field? Or just an avid reader in the subject?
Once again, a big thank you to all who responded for your time and thoughtfulness. I do have some new questions for my endo, and that's helpful.
@gently Sorry, but I don't seem to have the segmental scores. They did discount the reading for L1, since it's compressed (duh) and thus would increase the overall t score. The first radiologist after the fracture actually did include it, so my t score was terrific -- until my endo realized what had happened and recalculated it.
a onewyorker, so the endocrinologist you see has your scores. You've done enough (for me) in your organizational frenzy with the numbers. But I would want that information before deciding on Prolia. If you decide on another year or more years on Tymlos or Forteo, you don't need those numbers.
You have a very good point about Prolia, perhaps, protecting you from further bone loss.