What should I know before starting Evenity?

Posted by bevlevvancouverbc @bevlevvancouverbc, Sep 4 6:24pm

Sept 4th, 2024
EVENITY
Like many of you, I have started from shock, to fearfulness to being
apprehensive what medication to take for severe osteo.
My numbers are L -5.2 hips -3.6 and -4.0
I hoped to be able to improve the numbers with diet and exercise.
Eventually I realized that it might be possible with osteopenia
but probably not with severe osteoporosis. Dr Beck
Onero program is not available in Vancouver, yet.
I am trying to learn hip hinge and squats
eventually I will find a a physical therapist/kinesiologist
with osteoporosis experience.
I do the stairs as often as I can, increasing how many times:
until hopefully add ankle weights.
My threadmill speed is 2.2mph..the goal is to increase every few weeks:
method: increase, count 24 seconds - go back to starting baseline – several times:
the goal is 2.5mph which is maintenance: and the larger goal is 3.1mph
which is osteogenic.
Diet: aside from the calcium and and Vit D: am looking into natural
sources of Vit K (Natto is not something I could consume regularly).
and have 5-6 prunes daily.
So…have finally made the decision to go with Evenity, if approved.
Have not used anything in the past: anabolic or anti resorptive.
Thank you for ladies from Canada for mentioning CTX. It is available
in Vancouver (sorry I didn’t mark down names) P1NP and TBS is not available.
Neither is REMS. I got a CTX – which we pay out of pocket here, so is
Vit D out of pocket unless it’s requested by a specialist. And TBS is
not available either. My CTX was in the 500.
Would be glad to hear comments, or shared stories.

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

@awfultruth

@windyshores That's how my thinking goes too. "locking in gains" is a bit of an exaggeration and as you say for a limited time. I'm only just beginning to look into that but it seems that after stopping bisphosphonates you may get a limited number of years of slow decline of bone density. That's your "drug holiday". And that slow decline may vary significantly with Risedronates having the fastest decline and Reclast the slowest.

I am just at the point of starting my second med as a follow up to Evenity and I hope to do another round of Evenity (though maybe a shorter round) after that. But eventually even if I continue to be successful in gaining bone density (and quality I hope) I have to face the same issues we are talking about here. How can we keep those gains and not suppress normal bone functioning too much and for too long? If we take Fosamax or Reclast for 3 years and stop - how long will we keep our bone density? Will we lose all we gained if we stop for 3 years or 5 years? Will we be scared into taking Prolia because it can (supposedly) be taken for more years without danger of overly brittle bone? It's a mess.
Are there studies that address these long term concerns? Any talks by top doctors?

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@awfultruth I am with you. My doctor has already bent his protocols for me twice! I am hoping to have a good conversation.

I think we forget that after menopause, it is natural to continue to lose bone density. So I separate "locking in gains" from natural loss as two separate issues.

I don't want to lose what I gained from meds in a rebound type of situation.

But I might be okay with a slower natural loss if I can go back on an anabolic and do the whole rigamarole again.

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@bwaykm

I am also concerned about the heart attack and stroke risk. I hve cancelled my Evenity apointment 2 times. It keeps me up at night trying to decide what to do. I've tried all the other drugs and don't want to do Prolia. All my doctors say it's my decision.

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@bwaykm I hope you can keep an appointment for Evenity.

Many drugs have stroke and heart risks listed as possible side effects- even my NSAID.

If you look at the FRAME and ARCH studies on cardiovascular risk with Evenity, there is no difference between Evenity and placebo. There is a small but apparently statistically significant difference with alendronate and I have read that might be because alendronate is somewhat protective.

I have afib and had no heart/ cardiovascular issues with Evenity!

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@maieva

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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@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!

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@maieva

Thank you letting me know your experience. I was hoping that the second year of Reclast would raise my spine score of 3.5 up further, but my score is now 4.0. I am hoping that Evenity can give me some reassurance that I won’t start fracturing in my spine. There are so many scary stories out there. I was going to a Physical therapist and she said that I wasn’t going to fracture that easily. This is the piece of information that I keep hearing conflicting information. My endocrinologist told me to not bend over a lot and don’t lift anything heavy. Do you realize how much we bend a day? Lots! I do squat and don’t bend from the waist, so my therapist did teach me this. I am encouraged to begin Evenity. I feel I have no choice at this point. Please let me know if Evenity helped with your scores.

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Yes, will let you know. Will be a while alas as I'm scheduled for my scan only 5 1/2 weeks after my last Evenity treatment which was a week ago. And I don't see the doctor again for 7 weeks after the last treatment. (In fact I've been meaning to write and ask people how long after their l2th Evenity shots did they got their blood tests / new scans / doctor appointment...)

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@awfultruth

@maieva I chose Evenity and it worked great for me. Great increase in bone density and no side effects worth even mentioning. I had fears about it and I looked at the studies or at least discussions of the studies and what the top osteo docs were saying. My conclusion was that Evenity has the least frequent substantial side effects of any of the osteo meds. That's just my personal sifting thru the available info including a lot of scanning of what people are reporting on forums and groups.
As to the CVD fears, well that is perhaps a legitimate fear and most top docs just say if you've had recent heart issues they don't recommend it. They don't seem to worry about heart issues beyond that.

My summary is that Evenity is clearly the most powerful med we have available for increasing bone density and reducing fractures. And it has in general for most people less side effects. The main argument against it is the lingering doubts about CVD safety and the general worry that it hasn't been around long enough to know for sure about it's safety.
I just spent a few minutes trying to check into how long it's been around. I found that it was approved in 2019 (that's 5 years ago now), the major trials were completed several years before that I believe, and I found research articles going back to 2011. Evenity was called AMG 785 in 2011. That's just a quick check but it does give some reassurance that it's not just been thrown onto the market. Yes they could still find some new bad side effects but it's been studied for many years now so if there are bad side effects still to be found they must not be happening to very many people.

My simple take - Evenity is the best we got and it's working well for most people.

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@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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@maieva

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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@maieva

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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@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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