newenglandtransplant, these are truly fantastic gains - congratulations! You must feel so encouraged seeing such great progress. I'm very happy for you.
Out of curiosity, did your dxa also include femoral neck results or TBS?
Did you start HRT at the same time as Evenity? If you happened to monitored bone markers during therapy, I'd be really interested to see how they changed, only if you feel comfortable sharing, of course.
It's great that you've already got a long term plan. I've heard of people doing a second round of Evenity, so it's nice to know that's an option if ever needed.
Has your endo mentioned whether HRT alone should be enough to maintain your gains going forward, especially if estrogen deficiency is the main cause of your bone loss?
Thanks so much for sharing your experience!
Thank you, @mayblin Yes, I’m feeling encouraged, which is a welcome feeling. And I’m happy to share anything I can.
First, femoral neck:
Left Femoral Neck: from -2.1 to -1.7, BMD +7%
Right Femoral Neck: from -1.8 to -1.5, BMD +6%
I started MHT the day after my first Evenity injections. While osteoporosis wasn’t the only driver for this, it was a factor.
My bone marker results were:
August 2024: CTX = 526, P1NP = 62
January 2025: CTX = 310, Bone Specific Alkaline Phophatase = 28
September 2025: CTX TBD prior to Reclast infusion in October
The switch from P1NP to BAP was due to seeing different doctors.
Over the last couple of weeks, I met with both my local doc and my Mayo doc. I opted to see both as I wanted to be absolutely sure about next steps. They each recommended the same - an initial infusion of reclast with additional infusions when indicated by CTX. And neither of them thought estradiol alone would be strong enough to maintain the Evenity gains. I asked my Mayo doc if a larger dose may be enough, and he did not recommend this. Disappointing for sure, but not too surprising.
The TBS is where things get a little interesting. I actually had two dexas in August - one at Mayo and one at the bone clinic near me. One of them will be out of pocket. I chose this because I wanted to be able to compare bone density pre and post Evenity. This meant a scan at Mayo on the same Lunar machine as last year. And I had a scan locally on the Yale clinic’s Horizon as my future scans may be local, and having a scan now will make for simpler monitoring of future BMD change. My T scores were pretty similar between the two machines, but the TBS was different. I haven’t had a chance to look too deeply at this yet.
TBS August 2024 to August 2025, Lunar: from 1.232 to 1.241, +1%
TBS August 2025, Horizon: 1.364
For now, I’ll share a paper from late last year on Evenity and TBS. Some interesting discussion, and the reference papers are also interesting.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11789382/