Evenity Advice?

Posted by maieva @maieva, Sep 26 11:14am

I am 66 years old and have been on Reclast for two years with some improvement in my scores, although the second year my spine score went down. My endocrinologist at Mayo Clinic discussed Evenity and Tymlos and I think I am going to try Evenity since it is one year and convenient to go once a month to the clinic to get the injections. I had concerns about the black box warnings regarding heart attack and stroke, but she reassured me that she has not heard of anyone experiencing this. I also have an appointment with my cardiologist to see what he says before I start. I don’t know what else to do and yes, I’m very nervous about taking this drug, but I know it’s supposed to give me big gains in my spine where I need it the most. Any additional advice?

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I would love to hear more from people who have locked in gains post Evenity with HRT and/or resistance training versus Prolia or Reclast. Please speak up if you did. I am currently scheduled to start Evenity in Nov. I figure I have a year to figure it out. At this point I’m opposed to any bisphosphonate if there is an alternative!!

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@osteoresearch I have done two low dose Reclast infusions and may stop. I did Tymlos for two years and Evenity for months. If you do the whole year, the latter part is anti-resorptive. I don't think enough research has been done since Evenity is so new (2019). I have wondered if the anti-resorptive months help lock in the anabolic earlier months.

I sure cannot do resistance training or weight lifting- too far gone w/fractures though DEXA is borderline now for spine. I can't do HRT due to breast cancer. If you have those options, let us know what happens!

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@spiderplant

@awfultruth: Had my last Evenity treatment on Oct 4th and wondered what recommendations you were given for spacing between last shots and starting a new treatment (Alendronate / Fosamax for you?) as I have a DEXA scan is scheduled for 5 1/2 weeks after my last shot and doctor appointment 7 weeks later and seems a lot to me. And I don't find much online on the subject and it's not a doctor's office that's easy to hear back from when I have questions!

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@spiderplant Like you, I have seen little online about how long after the last Evenity shot you should wait to start a follow up drug. My doc told me to start 30 days after I finish Evenity but offered no reason why or what would happen if you waited 2 or 3 months. I haven't been searching for info on that but if you find any please post it.
I've decided on Risedronate. It was my wish based on Dr Michael McClungs logic on the subject as stated in an open mic discussion during the last Santa Fe Bone Conference. He recommended it if you want to do another round of Evenity with a year or so period in between which is what i want to do.

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@awfultruth

@spiderplant Like you, I have seen little online about how long after the last Evenity shot you should wait to start a follow up drug. My doc told me to start 30 days after I finish Evenity but offered no reason why or what would happen if you waited 2 or 3 months. I haven't been searching for info on that but if you find any please post it.
I've decided on Risedronate. It was my wish based on Dr Michael McClungs logic on the subject as stated in an open mic discussion during the last Santa Fe Bone Conference. He recommended it if you want to do another round of Evenity with a year or so period in between which is what i want to do.

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@awfultruth glad you mentioned a doctor. I am going to look him up.

My doctor said 60 days was the limit for waiting between Evenity and my low dose Reclast. He said Evenity "takes awhile to mineralize" so didn't want me to do it right away.

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@spiderplant

@awfultruth: Had my last Evenity treatment on Oct 4th and wondered what recommendations you were given for spacing between last shots and starting a new treatment (Alendronate / Fosamax for you?) as I have a DEXA scan is scheduled for 5 1/2 weeks after my last shot and doctor appointment 7 weeks later and seems a lot to me. And I don't find much online on the subject and it's not a doctor's office that's easy to hear back from when I have questions!

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@spiderplant I did a quick check on the Evenity facebook group and everyone says 30 days because that's what their doctor told them. One person had a link to an Amgen site where they say their studies of going from Evenity to Prolia were done with Prolia starting 30 days after the last Evenity dose. No one mentioned a study on the issue. I stopped reading in that group when I found a comment by myself on the topic from 7 weeks ago. I had completely forgotten it. Pretty funny. In that comment responding to someone who was asking about waiting 3 months, I said ""In contrast, BMD in the total hip decreased by 5.4%, returning to the pretreatment level, and lumbar spine BMD decreased by 9.3% but remained above baseline in participants who received placebo for 12 months after stopping romosozumab 210 mg QM." That is from: https://academic.oup.com/jbmr/article/33/8/1397/7605217...
So that source is saying you lose most of your gains by 1 year. Your question is how much of that happens in 90 days?"
The upshot is you lose most of your gains in a year but what happens in those first weeks? Is there actually any direct evidence that the time after the last Evenity shot should be 4 weeks or two months or anything else? Hopefully not too much is lost right away!
Here's a chart showing declines of bone density after stopping different meds with no follow up meds. It appears to be based on results after a year as all the losses are in a straight line. So it is not of much use in our question here.

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@awfultruth

@spiderplant I did a quick check on the Evenity facebook group and everyone says 30 days because that's what their doctor told them. One person had a link to an Amgen site where they say their studies of going from Evenity to Prolia were done with Prolia starting 30 days after the last Evenity dose. No one mentioned a study on the issue. I stopped reading in that group when I found a comment by myself on the topic from 7 weeks ago. I had completely forgotten it. Pretty funny. In that comment responding to someone who was asking about waiting 3 months, I said ""In contrast, BMD in the total hip decreased by 5.4%, returning to the pretreatment level, and lumbar spine BMD decreased by 9.3% but remained above baseline in participants who received placebo for 12 months after stopping romosozumab 210 mg QM." That is from: https://academic.oup.com/jbmr/article/33/8/1397/7605217...
So that source is saying you lose most of your gains by 1 year. Your question is how much of that happens in 90 days?"
The upshot is you lose most of your gains in a year but what happens in those first weeks? Is there actually any direct evidence that the time after the last Evenity shot should be 4 weeks or two months or anything else? Hopefully not too much is lost right away!
Here's a chart showing declines of bone density after stopping different meds with no follow up meds. It appears to be based on results after a year as all the losses are in a straight line. So it is not of much use in our question here.

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Great chart @awfultruth. It shows that "locking in gains" with bisphosphonates is not short term at all. This was good timing for me as I decide on continuing with Reclast so thanks!

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@awfultruth

@spiderplant I did a quick check on the Evenity facebook group and everyone says 30 days because that's what their doctor told them. One person had a link to an Amgen site where they say their studies of going from Evenity to Prolia were done with Prolia starting 30 days after the last Evenity dose. No one mentioned a study on the issue. I stopped reading in that group when I found a comment by myself on the topic from 7 weeks ago. I had completely forgotten it. Pretty funny. In that comment responding to someone who was asking about waiting 3 months, I said ""In contrast, BMD in the total hip decreased by 5.4%, returning to the pretreatment level, and lumbar spine BMD decreased by 9.3% but remained above baseline in participants who received placebo for 12 months after stopping romosozumab 210 mg QM." That is from: https://academic.oup.com/jbmr/article/33/8/1397/7605217...
So that source is saying you lose most of your gains by 1 year. Your question is how much of that happens in 90 days?"
The upshot is you lose most of your gains in a year but what happens in those first weeks? Is there actually any direct evidence that the time after the last Evenity shot should be 4 weeks or two months or anything else? Hopefully not too much is lost right away!
Here's a chart showing declines of bone density after stopping different meds with no follow up meds. It appears to be based on results after a year as all the losses are in a straight line. So it is not of much use in our question here.

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I am surprised the chart from 2018 has Evenity on it when Evenity was not approved until 2019.

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@normahorn

I am surprised the chart from 2018 has Evenity on it when Evenity was not approved until 2019.

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@normahorn Yes, I was too. But research on it was going on back before 2010 if my memory is correct. And one of the main trials ended like in 2017 maybe? Anyway research and trials were going on for many years before that.

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@normahorn

How many have seen that Australia has upped their warnings on heart issues with Evenity?
https://www.tga.gov.au/news/safety-updates/new-warnings-romosozumab-evenity-cardiovascular-risks

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@normahorn this info doesn't look new but seems to reiterate the results of the FRAME and ARCH studies. It looks like they did add some new language to expand the warning but it is still based on the same two studies. From your linked update:

"The Australian, European Union and United States product information documents all describe the results of 2 pivotal studies providing data about the potential risk of major adverse cardiac events associated with romosozumab.1,2 There was a higher rate of major adverse cardiac events (a composite of cardiovascular death, non-fatal myocardial infarction and non-fatal stroke) associated with romosozumab in one trial but not the other. The disparity between these 2 trials has been a focus for regulators assessing the safety of this medicine."

I have seen one article that accounts for the difference between Evenity and alendronate as being due to cardiovascular protective factors from alendronate use, and another article claiming it was due to chance. Clearly more research is needed.

I also have read that while cardiovascular risk has been the focus of research on Evenity, the effects of inhibiting sclerostin throughout the body have not been adequately studied (bone marrow inflammation, B cell suppression, osteoarthritis etc.) But those problems seem not to have emerged in any significant way since it went on the market.

I am cautious: I took it for 4 months and hope to be able to do that again.

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