Hi All!
So much to read and digest since I first posted this thread. Thank you to everyone for experiences, advice and knowledge as I am still learning new things every day.
I finally saw my new endo and had a dexa to see what Tymlos was doing. Results are good.
Jan 2023 dexa -3.6
Feb 2025 dexa -3.1
Hip score was the same
I have asked about bone markers, albeit it was after I began treatment because I never heard of them until reading them here, asked about REM echolight, trabecular bone score, no dice. None of the drs I've seen use them, the tech never heard of echolight, etc. I don't live in a large metro area so my options are limited.
I didn't start Tymlos right away after my diagnosis, but started in Jan of 2024. I did not take it in Feb of 2024 pending finding out if it was ok to continue based on some heart racing side effects. I am still having that for around 30-45 mins after injection, but have continued to muscle through with some modifications to my morning routine. I am on month 13 of 24 now and will continue until the 2 yr mark. Fingers crossed the improvement continues and doesn't wane in the next year. I have read and learned from this site and others that the gains are not always as much in year 2.
So after year 2, the dilemma remains. What to do next. My new endo is supposed to be the osteoporosis guru at the teaching university near me. I was lucky to get an appointment with her.....however.....she has done extensive research and her published papers are mostly on Prolia. She is leaning to having me start that, which is a monoclonal antibody or a bisphosphonate after Tymlos to "seal in" my gains. She likes to keep Evenity (romosozumab) "in her back pocket" because you can only take it for a year, so save it for after the bisphosphonates or Prolia. Problems I see are if you seal up your gains by using Prolia or a bisphosphonate first, for however long, Evenity or an anabolic will not work as well because they can't penetrate the bone. I'm not wanting to seal anything up as long as there's a continuing chance to keep building more bone. I could go to Forteo, but she didn't seem to want to discuss all the options to in-depth until next year. I want to build bone that is strong for as long as possible.
I broached the subject of HRT with her and she was as absolutely against it as my rheumatologist is. It was a hard NO. All for the reasons of being past the 10 year mark from menopause, cancer risks, cardiovascular risks, yada yada. I asked if bioidentical HRT which is not processed through your liver and causes all the problem were ok. Again she said no because "estrogen is estrogen and it is all processed by your body the same". There are a lot of HRT studies and research that say the exact opposite, that bioidentical HRT actually protects against all of the things that the WHI report claimed in the early 2000s..... Because it is NOT processed through your liver which is what causes a lot of the problems.
I'm considering trying to find someone who can do the proper hormone testing and monitoring, which is imperative to get the dosage correct, starting the therapy and then next year see what happens. I wonder if it's better to act and ask forgiveness at my next visit in Feb 2026, than to not act at all.
In the meantime, I continue to do my workouts. I lift, do yoga, pilates, HIIT and other cardio. Am finally getting back into walking after a pesky knee injury that stopped me literally in my tracks. Goal is to get back to doing 5k runs this summer. Fingers crossed.
Cheers to all and Thank you all again!!
Brand new to this forum - I did a lot of research when I was diagnosed (in April it will be 2 years ago), but never found this - wish I had! I was diagnosed almost 2 years ago. After a few months on Fosamax (couldn't tolerate due to reflux & I didn't like the possible jaw side effects - I'd just had a dental implant) I've been on Tymlos for almost 18 months. I had a DEXA at the 6 month mark & it had helped my spine a good bit (-3.2 to -2.8) although hips hadn't changed. My doctor had told me I could take it 18 months, but now I'm seeing 2 years, so maybe can push back the what to do next (which is how I found this forum!) for a little while longer. I'm 60, in good shape and eat healthy generally. I do pilates once/week and strength training 2x/week. I need to walk more, but have knee issues.
Going to my gyn next week and plan to ask her about HRT. I fall into the age group of never took it because it was "bad" for you & now studies have been updated and it is good to take. Also had ablation surgery at 42 and never had another period, and minimal menopause symptoms, so never had issues I needed to treat. I will be 61 this year and not sure what to do after the Tymlos. I hate taking medications, but know that I will have to continue if I want to maintain my active lifestyle.
Anyone else 60-ish and post Tymlos? What are you taking? Seeing my rheumatologist at the end of April and will need to make a decision. She discussed lots of options at my last appointment, but now I'm close to having to make the call on what to take. Thanks!