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Update Evenity followed by 2 years of alendronate
So DEXA just showed that my 22.9% spine gain is now only 11% meaning I lost that much in a year. And femoral neck about the same loss. So I went backwards considerably but haven’t fractured. Have not seen doc yet (Nov 6)
Frustrated and sad. I had great results from Evenity after a year that continued after 1 year of alendronate and expected continued improvement. Nothing else has changed. I exercise regularly, resistance work, swimming and walking 4-5 miles daily. (very active) Vitamin D is 51. All labs good. Waiting on CTX. Last from May 2025 was 361.
I was hoping for a drug holiday after 2 full years of alendronate. I surprised myself as I tolerated it very well, never missed a dose! I just turned 69 and so far no one will give me HRT. I had a coronary calcium score that was zero. I was worried as my cholesterol was creeping up to 259 with an LDL of 151 but an HDL 66 so I started rosuvastatin 20 mg daily but after the coronary calcium dropped it to three times a week . Now cholesterol is 152 and LDL down to 69 maintaining HDL at 70. This is essentially the only change I made.
No fractures and vertebral fracture assessment was negative.
What do I do next? I need a long term plan. Can I do a short course of Evenity or will the alendronate blunt it. Was the alendronate not strong enough. Should I have gone right to reclast? Is it too late since I’ve already lost so much? I’m scared of Prolia. T-scores spine is now 2.3 and femoral neck is 3.0. I essentially lost BMD everywhere taking alendronate this last year! I just don’t understand. Any input most welcome 🙏
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@mayblin Thank you for your kind input. CTX was 293 right before 2nd round of evenity and the 489 was after 5 months. I had the bloodwork done before I had shot 6. I do not have a PINP and unfortunately doc doesn’t like them. I usually just insist and he relents. Interestingly i have a CTX of 531 after my first round of evenity before i started alendronate. While on alendronate CTX values were in the 250-293 range and PINP was 23-26. Maybe I haven’t factored in the bunion surgery itself as well as the recovery. No question I was not exercising for 2-3 months after.
I am looking into maybe 1 year Prolia➡️Reclast with annual DEXAs
@hikernurse Alendronates incl Reclast, Evenity also have the femur and jaw risks. Is there a greater risk with Prolia I don’t know about? I believe you’d want to be on Evenity for a year. I was on alendronate then Prolia (tried Forteo but no go after one dose), now thinking about Evenity (I’m concerned about heart disease and stroke risks but) still want to build bone and Prolia gains were small.
@cphip I think the aversion to Prolia stems more from the fact that you cannot simply just stop it without the risk of multiple vertebral fractures than from the jaw and femur potential issues shared by both. So if you take Prolia, you MUST follow it up with a bisphosphonate, or take it for the rest of your life. For people who already know from past experience that they can't tolerate alendronate, that would be a real deterrent to taking Prolia, unless they were willing to take it forever. If the problems with alendronate had been gastrointestinal issues, the infusion (Reclast) wouldn't pose the same issue.
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1 Reaction@cat1203 agree. After Evenity I was put on alendronate and I absolutely thought I would not tolerate it. I only had occ episodes of acid reflux but had zero while on the alendronate. And I was very happy I added to the Evenity gains so spine was 23% improved T score -3.1 to -2.0 to -1.6. I was so happy but then the last year I slipped back to -2.3. Maybe I should have done Prolia right away or Reclast. The one thing this showed me is be sure to get an annual DEXA even if you have to pay yourself. I’ve not had any problem having Medicare cover it
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1 Reaction@mayblin Doc has suggested repeating DEXA now. Declines PINP because he says I didn’t have a baseline and is suggesting evenity isn’t working. Not sure how meaningful a DEXA would be after just 6 months given my short period of immobility. Any thoughts
@hikernurse, i like your doctor's suggestion of an early DXA as it really is the ultimate measure for verification. I’ve read about some here seeing measurable gains on Evenity as early as 4 -6mos; for others, DXA might show a more delayed effect since newly built bone needs time to fully mineralize to be picked up by the scan. Ive done DXA twice within a year myself, just to be sure which drug was affecting my BMD and to what degree. That turns out to be helpful to track progress details.
Regarding P1NP, I understand your doctor's point about a baseline. But since you have those readings of 23&24 during fosamax treatment, that could serve as a baseline of sorts. If you were to test it now and get a reading meaningfully higher than 24, then it’s a clear signal that formation is active. However, testing P1NP at the 6mo mark can be tricky - if the number isn't meaningfully high, it doesn't necessarily mean the drug isn't working; it might just be a timing issue as the initial 'spike' could level off at this point - so it may not be worth the stress of convincing your doctor for a lab order. However, JasonHealth offers online, self-order BTMs (out of pocket) if you decide you want to get it done anyway for your own curiosity.
I was puzzled about that CTX increase to 489 after 5 months on Evenity. Could it be explained by the combination of the surgery and the period of immobility (non-weight bearing, lack of mechanical stress), as well as coming off fosamax? All these could lead to ramping up resorption more than normal. It feels like the Evenity might be in a tug of war with those temporary factors, and DXA will be the best way to give you a clear confirmation.