Looking ahead after Tymlos: Reclast, Evenity or HRT?

Hi @windyshores. I recently finished almost 17 months of Tymlos. Unfortunately, I just found out I have high urine calcium (365), so I have to stop. At the one year mark I had a 14.7% increase in my spine and I am very pleased with that result. I don’t know if my hips improved or not because my left has been replaced and my right has a pin in it. (Therefore they can’t do a DEXA on either one.) They did test my right forearm and sadly it didn’t improve at all. I’ve been told that our forearms are mostly cortical bone and Tymlos doesn’t do much for that. This is very upsetting to me because I am a fine art painter and I’d hate to break my right arm or hand. Right now my forearm has a T score of -3.6 (severe osteoporosis). For this reason I wanted to do a short course (similar to what you did) of Evenity. I was hoping the Evenity would improve the cortical bone in my wrist. However, my doctor said that would be a huge mistake because I would probably lose all my gains from Tymlos. Since I had four compression fractures prior to starting Tymlos going back to square 1 is a terrifying thought! My question for you is did you lose any of your Tymlos gains while you were on Evenity? I assume not or you would have said so, but I’m asking the question because I have to be sure. Also, do you know of anyone else that followed this sequence with success? And lastly could you share the name of your doctor with me? You may want to PM that last information to me if you don’t mind providing it. I thought I had 7 more months to figure this all out, but now I have to know as soon as possible. If I don’t do the Evenity I plan to go on Fosomax. I did not chose Reclast because I have TMJD which often causes dental problems. From what I’ve read, Fosomax is much less likely to cause ONJ than Reclast. I’d appreciate any information you can give me. Thank you, @8fish

Good luck @windysgores! Let us know your results.

@8fish I wish I had known I could have a DEXA before 2 years. Noone told me that and I just found out!

I attended a master class with Lani Simpson before going on Tymlos and a woman in the presentation had done Tymlos then Evenity with gains from each. Some posters here have done that. My doctor said there was "no data" on this and both my doctor and another endo told me that I was the only one in their practice doing Evenity after Tymlos and was my "own protocol." My doctor wrote "thank you for your persistence" which I thought was humorous.

At 18 months my bone markers showed that Tymlos probably wasn't doing anything. I spoke to my endo, another endo (mine was away) and McCormick and all said to finish the two years but all agreed it might not be doing much. So stopping at 17 months might be okay. Congrats on your gains! (Cortical is tough to address!)

I am concerned that your doctor said you could lose all your gains if you do Evenity. Argh! Hope that isn't true! Evenity is so new that there is no research finished as yet to support going either way.

I am having a DEXA tonight. I did two years Tymlos at 7/8 dose. 4 months Evenity, half the time with one shot not two, and two 1mg (low dose) Reclasts in June and September. My CTX is 145 though my doctor does not rely on bone markers.

I feel like I have been flying a plane in the dark with no instrument panel! I see my doctor in early March and hope to discuss doing anabolics again, but I am sure there is "no data" on that either. A big question for our doctors: what is the long term plan? All these meds have time limits (Prolia is up to 10 years now but my doc doesn't use it). So if we have 20 years left, what's the plan?

@windyshores
Good luck with the DEXA! Interested to know the outcome.

I just looked back at my spinal X-rays and DXA 's from 2021 and 2023. I have fractures in T12, L1 and L5 but one x-rays says L2 as well. My 2021 DEX did L1-L4 ( two months after fracturing) and my 2023 DXA did L2-L4.

So comparisons may not be valid. Also, I just read that L3 and L4 do not give reliable results.

Fractures, scoliosis and arthritis (and other degenerative changes) all affect DXA (raise the scores in the case of fractures an arthritis). So I have a kind of ballpark mentality here. Plus DXA's fluctuate in my experience for no reason at all! At least I will have the same machine.

I had a 19+ gain in spine and 9% gain in hip with less improvement in femur neck between 2021 and 2023 and regardless of distortions from fractures I feel confident that Tymlos helped me a lot.

During COVID I was off Tymlos for 3 weeks (heart was affected by COVID) and then I didn't do full dose Evenity two out of four times. My doctor allowed me to wait two months to start Reclast and it was low dose, cumulative dose 2mg, and lst one was September. So I am nervous.

Hope you find out that you’ve make great gains! Let us know how your DEXA turned out! @windyshores

@8fish radiologist had a family emergency and my appointment was cancelled. They are very sorry so maybe they will find me a cancellation!

@windyshores
So sorry for the delay. Waiting for these tests is a whole other source of anxiety!

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!!