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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@kristie2

I had Evenity for 1 year and have moved on to Prolia to help build more bone density. I will do 2-3 injections and then Reclast. I started BHRT almost a year ago at 71 years. My endocrinologist was against it and all new studies were pointing in the right direction. Look for video’s on YouTube by Dr. Doug Lucas. Hope that this helps with your decision going forward.

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Thanks. I got no on bhrt from PCP, Endo and a gyno that I had consult with.
Some ideas die hard and our generation of women is paying the price

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@kristie2

I had Evenity for 1 year and have moved on to Prolia to help build more bone density. I will do 2-3 injections and then Reclast. I started BHRT almost a year ago at 71 years. My endocrinologist was against it and all new studies were pointing in the right direction. Look for video’s on YouTube by Dr. Doug Lucas. Hope that this helps with your decision going forward.

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Then I went to a functional medicine provider and just started bhrt. I am
thinking of the same sequencing plan.

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@windyshores

@pami you had 7 years without meds, is that right? So I don't think any doctor had told me that a long drug holiday like that is in the cards for me. My understanding is that over that time Reclast tends to dissipate, and the "locking in gains" applies to short term prevention of rebound from stopping other drugs. But I could be wrong: It does seem there is an expectation from doctors that Reclast will improve bone density over 3-5 years without risks, but if you didn't do any meds for 7 years it seems like natural post-menopausal bone loss would recur. Curious what others have to say!

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I have severe osteoporosis and one endocrinologist told me if I took 1-2 years of Reclast I wouldn't have to take anything else ever.

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@windyshores

@pami you had 7 years without meds, is that right? So I don't think any doctor had told me that a long drug holiday like that is in the cards for me. My understanding is that over that time Reclast tends to dissipate, and the "locking in gains" applies to short term prevention of rebound from stopping other drugs. But I could be wrong: It does seem there is an expectation from doctors that Reclast will improve bone density over 3-5 years without risks, but if you didn't do any meds for 7 years it seems like natural post-menopausal bone loss would recur. Curious what others have to say!

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@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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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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@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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@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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