@hollygs, thank you so much for your thoughtful post. My autoimmune problems have likewise had an enormous impact on my life (loss of a career, etc.), and I have worked hard for the past 40 years to be somewhat "normal." With age has come spinal stenosis, which adds pain to the equation, so I am thankful at least that my heart is stable (pacemakers are pretty miraculous!). But I dread adding another drug to the mix and possibly making life even more of a challenge.
I have had great difficulty finding a physician who is really up to date on the osteoporosis drug research, which is nuts, because the Austin metro area is full of good doctors. But endos and rheumatologists seem to be prescribing by the old accepted formula: Tymlos followed by Prolia followed by Reclast. I am on the verge of paying a ton of money for Doug Lucas' Optimal Bone Health program, but even if I do that, I will have to have a local physician prescribe Evenity, Prolia, or Reclast, because they are given in clinic.
Another issue: Lucas' program for individuals starts off with a complex lab work up, and by the time his folks get results and make recommendations, I will already be done with Tymlos and likely losing bone. (I have been warned that that happens very quickly.) I also have been told that a cardiologist would need to be in the mix when it comes to recommendation because of the warning on Evenity. My cardiologist has pronounced Evenity worth the risk for me, but he felt an endo should make the final decision, so I worry still.
I have educated myself as to osteoclasts, osteoblasts, P1NP, CTX, relative risk reduction vs. absolute risk reduction, and treatment sequences until I'm crosseyed, and I keep coming back to the reality that I won't be able to foretell how I'll react to any drug. I did receive some responses from folks in the MayoConnect autoimmune illnesses group, and their experiences with osteoporosis meds have been mixed. But your idea of doing a deep dive per individual comorbidity makes a lot of sense, and I thank you for that!
Could you please let me know how long you were on Evenity and what your experience with it was like? I realize our experiences are all so individual, but the more info I gather, the calmer I tend to feel about the whole situation! 🙂
Thanks again for your good wishes and your support. I do appreciate!
I was on Evenity for one year. I tolerated it very well - no issues whatsoever. DEXA and TBS showed good gains. My journey with osteoporosis meds is on this site under "Prescribed Tymlos after Evenity."
I was in the same boat - after finishing Tymlos I needed a new doctor and felt anxious about the timeline. Then I dialed back on the anxiety because I absolutely know that stress is terrible for my health and I don't want it in my life. I found a doctor who agreed to meet with me on a video conference the next day even though the usual wait for an appointment was 8 months. So I got lucky. Very lucky. I finished Tymlos 3/15/25 and my Reclast infusion was 5/12/25. My doctor put me on a drug holiday because I had been experiencing extreme fatigue and joint pain, and she thought it might be from the Tymlos and wanted my system to calm down. She was right as the fatigue and joint pain were gone in a month and haven't returned.
You're absolutely right that you can't foretell how you'll react to any drug. You've obviously educated yourself thoroughly. I will say that when I relaxed about the whole thing, I found it easier to tune into my intuition about what I should do. What I see from what you've mentioned is that your cardiac condition is stable and you seem to be more concerned about your autoimmune disorder.
Do let us know how you get on and what you discover.
Best wishes to you moving forward.