Evenity without Reclast

BMD gains from Evenity (romosozumab) are rapidly lost within 12mo after discontinuation if the treatment is not followed by an antiresorptive agent. See Figure 3A, 3C AND 3E, BMD changes of lumbar spine, total hip, and 1/3 radius over time after stopping romosozumab in https://academic.oup.com/jbmr/article/33/8/1397/7605217

Have you discussed this with the prescribing physician?

I have discussed this with my endocrinologist. He said to follow the cardiologist's advice, which requires that I take a diuretic as needed. It sounds like having had chemo and radiation is also an issue with Reclast. He did not tell me that I would need Reclast after the Evenity until I was well into the injection schedule. I can see that starting the Evenity was a big mistake.

@nwhiker I don’t see that taking Evenity was a mistake because it sounds like all of the other medical problems you’ve experienced occurred after you started Evenity. How could you or your endocrinologist predict this would happen?

Are there alternatives to Reclast that your endocrinologist suggests? Also, would you like your cardiologist to speak with your endocrinologist? You could fill out a release of information for these two physicians to talk with one another. Perhaps the two of them, together, may come up with a plan?

@nwhker

If you are worried about Reclast, there are oral bisphosphonates you can take instead so you do not lose the gains from Evenity by not following it with bisphosphonates. In terms of Reclast and taking after chemo/radiation, my sister's breast cancer treatments (including radiation and chemo) were specifically also treated with Zoledronic Acid infusions (to help prevent metastasis). Zoledronic Acid is what Reclast is. Same thing but her infusions were a much higher dosage. She tolerated very well.

@nwhiker I too went into Evenity injections blindly. Towards the end the doctor said I needed to start Prolia and I asked what if I didn't. She said I never would have given you the Evenity if I thought you wouldn't follow up with Prolia. I did but after one injection changed doctors and was started on Reclast. Live and learn.

@nwhiker I’ve been thinking about my response to you from yesterday. I think I understand why in hindsight you wish you had not started Evenity. It’s so difficult to know what is the best way forward when a medical provider does not fill you in with all the information you need to make decisions.

I have a history of endometrial cancer with a recurrence two years later. I had pelvic radiation therapy for the recurrence and fortunately have been NED (no evidence of disease) since then. However, I did experience a sacral fracture that was due to the radiation therapy. Before starting the radiation therapy, my radiation oncologist warned me that a could experience bone density loss in the radiation field. So, the fracture wasn’t a total surprise. I then saw an endocrinologist who spent a lot of time with me explaining my options. He said that I was doing everything I could do to preserve bone density with diet and exercise. But the fracture was concerning enough that he recommended Evenity. Why Evenity? Because there was evidence that some osteoporosis medications that build bone density may also contribute to metastisis and Evenity did not do this. He also told me that after one year of Evenity I needed to preserve my bone density gains with another medication like Reclast.

All this was discussed in my very first appointment with my endocrinologist. I’m so thankful that he spent the time with counseling as I knew what I was getting into before I started the Evenity.

I will share that all of what I wrote above occurred at Mayo Clinic in Rochester. My local family care provider also takes the time to provide explanations. The local specialists in my community do not and at most have spent 5-10 minutes with me before cutting off the consult. Very frustrating.

At this writing I hope that your cardiologist is answering your questions and helping you to find the best way forward.

What is next for you? Seeing a podiatrist and possible foot surgery?

@dlmitchell57 - I was also not informed that after Evenity I would have to be on a bone maintenance drug for the rest of my life. I refused Prolia and Reclast and settled for the "slow-moving Fosamax". But after reading the Royal Osteoporosis Society information about HRT being as effective as bisphosphonates, I've decided to continue with HRT instead. I'll have my bone turnover markers checked periodically to make sure things are going in the right direction. Then I'll have a REMS scan to confirm increase/decrease before reconsidering Fosamax.

@singingbones I was 64 and experienced a spine fracture when I was started on Evenity. I noticed the study references women under 60 or if older not at high risk. I asked my current doctor about hrt and she did not think it would help now.
Good luck to you.

I cannot take any more bisphosphonates since I took Fosamax and Actonel for a total of ten years. I stopped taking them in 2009. Having lost 2 inches in height already, I am not sure what will happen if I don't take the Reclast. It looks like the gain is lost. Is the baseline BMD maintained? I am having MOHS surgery on Thursday, wondering what the risk of the side effects will be if I have the Reclast infusion on Saturday.