What should I know before starting Evenity?

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

@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.

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?

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!

@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.

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

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?

@06111945cc if I ever got to -1.5 or -1.0 I would not take meds. As I wrote above there is natural bone loss after menopause. But with scores like that I personally would try natural approaches.

I will only have those scores in my dreams!

Dear windyshores,

I agree.

On the other hand. I’m fearful .

You make me question whether or not it’s true that we can’t maintain bones naturally.

You suggest that we can maintain bones naturally. How do we do that?

What is your proposed plan?

cc

I thought it was very high, too. Last Vit D-Hydroxy on 8/5/24 was 35 ng/mL (normal range), but calcium was 7.8 mg/dL on 8/5/24 (low). Last calcium on 10/4/24 was a bit higher at 8.1 mg/dL, so calcium level does seem to be improving. I had been taking 1,500 mg of liquid calcium citrate when it was 7.8, now with the increased 1,800 mg of calcium it’s up to 8.1 (getting closer).
Doctors recommend Evenity for me. I have an upcoming appointment & will ask them again about Tymlos & Forteo.
Thanks for your feedback & reply, I appreciate it!