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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@maieva I consulted with 2 cardiologists and they had no idea about Evenity vs Tymlos. One googled exactly what I had googled and tried to give the info to me as medical advice.

Reclast is an anti-resorptive and Evenity is too for part of the time. Tymlos is not, and actually raises both P1NP (bone growth) and CTX (bone resorption).

Since Reclast can affect the effectiveness of both medications, I would be most concerned about which one is the least affected and therefore the most effective in your situation.

Does your doctor do the bone markers P1NP and CTX?

I did Tymlos then Evenity (4 months) then Reclast. Tymlos gave me dramatic gains in my spine and the self-injection was easier for me than going in for an injection at the hospital.

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Don't know how much help it is but can share with you my experience. I'm 64 and yesterday had my last of 12 of the double shots of Evenity and so I don't know yet how much of a difference it will have made. I had similar worries (and now concerns about what will be next.) But what I do know is:

I had no side effects. I had them scheduled within a 29 to 32 day window and luckily that didn't clash with anything. I was in and out in 15 minutes and the nurses told me that people do really well with it. I learned a few things: who does it makes a difference. One nurse there on certain days would somehow manage the syringe or angle or whatever it was in my arm or belly (I could choose) and would leave a small mark for a day or two, no discomfort though. The other nothing... no bleeding, just this cold feeling when the stuff goes in... and walked out to the car feeling fine!

So at least if you do decide to go with it I'd think that along with the incidents of serious issues being so small... and how much is just the pharmaceutical covering itself against battles over heart issues that might have happened anyway... there are lots of people like me that had no issues. A site like this naturally would have lots of people that had issues writing but there are many like me who got on the site to get feedback on timing questions and such. (And it's great to have a community like this.)

Hope it's reassuring.

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@spiderplant

Don't know how much help it is but can share with you my experience. I'm 64 and yesterday had my last of 12 of the double shots of Evenity and so I don't know yet how much of a difference it will have made. I had similar worries (and now concerns about what will be next.) But what I do know is:

I had no side effects. I had them scheduled within a 29 to 32 day window and luckily that didn't clash with anything. I was in and out in 15 minutes and the nurses told me that people do really well with it. I learned a few things: who does it makes a difference. One nurse there on certain days would somehow manage the syringe or angle or whatever it was in my arm or belly (I could choose) and would leave a small mark for a day or two, no discomfort though. The other nothing... no bleeding, just this cold feeling when the stuff goes in... and walked out to the car feeling fine!

So at least if you do decide to go with it I'd think that along with the incidents of serious issues being so small... and how much is just the pharmaceutical covering itself against battles over heart issues that might have happened anyway... there are lots of people like me that had no issues. A site like this naturally would have lots of people that had issues writing but there are many like me who got on the site to get feedback on timing questions and such. (And it's great to have a community like this.)

Hope it's reassuring.

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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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I worried about the black box warning too and saw my cardiologist before I started. I have completed 12 months and gained 16 3/4% with biggest gain in my spine. I know take alendronate once a week, pill. I had no side effects with Evenity.

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@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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@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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No side effects and great results

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These posts really calm my nerves as I prepare for my first Evenity injection on Wednesday. Thank all of you for posting your positive results with Evenity. I finished 2-years on Tymlos in June, and basically had a 3 month drug holiday because of traveling. I had a 15% increase in my spine and 3.5% in my hips with minimal side effects. Praying I will have good results with no side effects. Rose 🌹

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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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Which med did you go on after finishing the course of Evenity?

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@rgibson123

Which med did you go on after finishing the course of Evenity?

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@rgibson123 I haven't started one yet. I'm wanting to follow Dr Michael McClung's advice from this Augusts Santa Fe conference which was using a less powerful antiresorptive after Evenity, IF you want to use Evenity again like after a year of the antiresorptive. He suggests for this specific case using a first choice risedronate or second choice alendronate. And not Reclast or Prolia. Risedronate is the least powerful of these and leaves the bones faster. His idea is that the second round of Evenity could have more effect the less suppressed your bone activity is.
I would like to take Evenity again to get even more improvement so that is the route I'd like to follow. If you are not wishing to repeat Evenity or use another anabolic soon then this would probably not be the logical route to follow.
There is unfortunately very little information on doing this kind of thing.
Trying to negotiate with my doctor currently.

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@awfultruth

@rgibson123 I haven't started one yet. I'm wanting to follow Dr Michael McClung's advice from this Augusts Santa Fe conference which was using a less powerful antiresorptive after Evenity, IF you want to use Evenity again like after a year of the antiresorptive. He suggests for this specific case using a first choice risedronate or second choice alendronate. And not Reclast or Prolia. Risedronate is the least powerful of these and leaves the bones faster. His idea is that the second round of Evenity could have more effect the less suppressed your bone activity is.
I would like to take Evenity again to get even more improvement so that is the route I'd like to follow. If you are not wishing to repeat Evenity or use another anabolic soon then this would probably not be the logical route to follow.
There is unfortunately very little information on doing this kind of thing.
Trying to negotiate with my doctor currently.

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Thank you for the detailed response!

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