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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@windyshores

@normahorn I just wanted to make sure people reading this didn't think the risk had increased. Instead the language changed. I personally felt a little alarmed when I saw your post, thinking some new info had been found in Australia. Some people might not read the actual content and react to the post itself so I just wanted to explain the content.

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I feel very confident that Australia did not make the change on a whim but had a basis for it. You may disagree.

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@normahorn

I feel very confident that Australia did not make the change on a whim but had a basis for it. You may disagree.

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@normahorn it's the same studies done already and 5 years of Evenity on the market has not, to my knowledge, revealed major CV problems. I have no idea why they expanded the content.

As a patient who has used it and may use it again, I would be interested in anything you see that is substantive that indicates increased CV risk. Are you able to find out why Australia did this change?

I cannot agree or disagree without more info.

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@newenglandtransplant my doc said there was "no rush" to get on Reclast after Evenity because it "takes time to mineralize" but gave me a limit of two months to wait. That's all I know. I waited exactly two months. My doc doesn't do bone markers. My CTX runs kind of low even at baseline which is interesting. It may be affected by kidneys although kidney disease would tend to raise it.

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@gravity3

I just finished Evenity. My endocrinologist wanted me to wait 5 mo. But I was concerned. Checked the prolia website and the say 1 months and 7 days. I emailed him my concern and he called me and said he had contacted some other "bone docs) and some do 6 mo and some 1 mo. I hate that their is so much is unknown. Scary!

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@gravity3 (and also @newenglandtransplant, @windyshores, and @normahorn) As you mention the Amgen - Prolia website does clearly state that a wait of 30 days plus or minus 7 days was used for the Frame study. "*In the FRAME study, Prolia® was initiated 1 month +/- 7 days from the last monthly dose of EVENITY®." So a period of 23-37 days was used.
From: https://www.evenityproliasa.com/evenity-to-prolia-transition

I tried yet again to find more info on how long after stopping Evenity before you go to the next med. I found no clear discussion of this. I looked at one or two studies that went beyond 1 year and had a follow up med after Evenity. Maybe I was just looking at the Frame study or the extension to it. Anyway I could not find a statement specifying a time period. What I did see is that there is an implication that a 1 month period after Evenity was used. The studies would specify months 1-12 and then 13-24 or endpoint 24 etc. If patients were taking the next med starting at any date other than the next month I believe it would have been specified because when you state months 1-24 it does imply that months 13-24 were on the follow up med. My unverified conclusion is that those studies were doing the next med at 1 month after the last Evenity shot.

That does not prove 1 month is ideal but it does show what we have data for. There may be no study data available for any other length of wait time?

And here's Amgen saying start follow up at 1 month.

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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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Hi awfultruth,

Thank you for sharing this.
Just before I read your comment, I just so happened to be looking at the page on the Amgen site that the person in the Evenity Facebook group referred to: https://www.evenityproliahcp.com/evenity-to-prolia-transition

Like many of us on this forum, I'm considering what comes next for me post Evenity. The 12 months seems to be going pretty fast. I had my 9th injections almost 2 weeks ago. I'm trying to make sense of the research that's out there.

Unless I'm reading it wrong, on the chart you shared, it looks like BMD post Alendronate was the best. That's likely the result for patients who have only ever taken Alendronate. I'd like to read the full study, but it's behind a paywall. 🙁 Here's a link behind the paywall that I found for the study: https://www.nature.com/articles/s41574-018-0087-0

While I was searching for the chart online, it led me to something interesting that might be helpful for some of you. It's a summary from part of a 2018 meeting of the American Association of Clinical Endocrinology (AACE) International, Italian Chapter which compiles numerous studies on anabolic agents. It references the study containing the chart you provided as well as Dr. Ben Leder's research on combination and sequential therapies and many others. It brings together a lot of information in one place. For anyone who's interested, here's the link (the notes are in English): https://www.associazionemediciendocrinologi.it/images/eventi/congressi-nazionali/2018/relazioni/aace/2-bone/09_chiodini.pdf

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@hopefullibrarian

Hi awfultruth,

Thank you for sharing this.
Just before I read your comment, I just so happened to be looking at the page on the Amgen site that the person in the Evenity Facebook group referred to: https://www.evenityproliahcp.com/evenity-to-prolia-transition

Like many of us on this forum, I'm considering what comes next for me post Evenity. The 12 months seems to be going pretty fast. I had my 9th injections almost 2 weeks ago. I'm trying to make sense of the research that's out there.

Unless I'm reading it wrong, on the chart you shared, it looks like BMD post Alendronate was the best. That's likely the result for patients who have only ever taken Alendronate. I'd like to read the full study, but it's behind a paywall. 🙁 Here's a link behind the paywall that I found for the study: https://www.nature.com/articles/s41574-018-0087-0

While I was searching for the chart online, it led me to something interesting that might be helpful for some of you. It's a summary from part of a 2018 meeting of the American Association of Clinical Endocrinology (AACE) International, Italian Chapter which compiles numerous studies on anabolic agents. It references the study containing the chart you provided as well as Dr. Ben Leder's research on combination and sequential therapies and many others. It brings together a lot of information in one place. For anyone who's interested, here's the link (the notes are in English): https://www.associazionemediciendocrinologi.it/images/eventi/congressi-nazionali/2018/relazioni/aace/2-bone/09_chiodini.pdf

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@hopefullibrarian Hi, I haven't digested your comment yet but here is a link to see the full version of the Advantages and Disadvantages .. paper.
https://sci-hub.st/10.1038/s41574-018-0087-0
sci-hub can be wonderful for older papers. At some point there was a crack down on their efforts to make these scientific papers available to everyone. Not sure what year that was but something like 2020. Before the crack down they had lots of journal papers that most of us could not access or afford to pay $30-$50 to read.

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@awfultruth

@gravity3 (and also @newenglandtransplant, @windyshores, and @normahorn) As you mention the Amgen - Prolia website does clearly state that a wait of 30 days plus or minus 7 days was used for the Frame study. "*In the FRAME study, Prolia® was initiated 1 month +/- 7 days from the last monthly dose of EVENITY®." So a period of 23-37 days was used.
From: https://www.evenityproliasa.com/evenity-to-prolia-transition

I tried yet again to find more info on how long after stopping Evenity before you go to the next med. I found no clear discussion of this. I looked at one or two studies that went beyond 1 year and had a follow up med after Evenity. Maybe I was just looking at the Frame study or the extension to it. Anyway I could not find a statement specifying a time period. What I did see is that there is an implication that a 1 month period after Evenity was used. The studies would specify months 1-12 and then 13-24 or endpoint 24 etc. If patients were taking the next med starting at any date other than the next month I believe it would have been specified because when you state months 1-24 it does imply that months 13-24 were on the follow up med. My unverified conclusion is that those studies were doing the next med at 1 month after the last Evenity shot.

That does not prove 1 month is ideal but it does show what we have data for. There may be no study data available for any other length of wait time?

And here's Amgen saying start follow up at 1 month.

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I remember feeling this way when I started on birth control and felt like a guinea pig ...
As I do now with osteoporosis meds.

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My bone health specialist has recommended I start Evenity as I have osteoporosis & have had a spontaneous spine fracture.
I had bariatric surgery 18 years ago & suffer from malabsorption & despite taking 1,800 mg of liquid calcium citrate concurrently with 15,000 IU of liquid Vitamin D3 (split into 4 doses per day) & we can’t get my calcium levels up in the normal range. Evenity warnings specifically state not to administer to patients with low calcium levels so we keep trying by increasing calcium citrate & D3. I do not want to start Evenity until levels are normal. Has anyone else experienced this problem or can offer any advice? Thanks!

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@mancos

My bone health specialist has recommended I start Evenity as I have osteoporosis & have had a spontaneous spine fracture.
I had bariatric surgery 18 years ago & suffer from malabsorption & despite taking 1,800 mg of liquid calcium citrate concurrently with 15,000 IU of liquid Vitamin D3 (split into 4 doses per day) & we can’t get my calcium levels up in the normal range. Evenity warnings specifically state not to administer to patients with low calcium levels so we keep trying by increasing calcium citrate & D3. I do not want to start Evenity until levels are normal. Has anyone else experienced this problem or can offer any advice? Thanks!

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Wow that is a high dose of Vitamin D3 @manco! What is your current D3 level?

Maybe you could do Tymlos or Forteo since they raise calcium levels! At least for a few hours. Not sure what level is needed for those to work. What does your doctor say?

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@awfultruth

@hopefullibrarian Hi, I haven't digested your comment yet but here is a link to see the full version of the Advantages and Disadvantages .. paper.
https://sci-hub.st/10.1038/s41574-018-0087-0
sci-hub can be wonderful for older papers. At some point there was a crack down on their efforts to make these scientific papers available to everyone. Not sure what year that was but something like 2020. Before the crack down they had lots of journal papers that most of us could not access or afford to pay $30-$50 to read.

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awfultruth--This is awesome! Thank you so much. I have to bookmark that site.

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