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.

@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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@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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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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@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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@awfultruth the problem is that research hasn't caught up with this idea. My doctors didn't even want me to do Evenity after Tymlos at all- just Reclast- and McCormick didn't suggest it either. Doing more than one year of Evenity has not been studied either. I am not afraid of cardiovascular effects but sclerostin has functions throughout the body.

This is moot for me because with GERD/reflux I cannot take risendronate or alendronate. McCormick did tell me risendronate is the weakest bisphosphonate (so should not be used after Prolia).

Tymlos isn't approved for a second year either. I only did 4 months Evenity so I still have 8 more to go. So another idea that has been mentioned in articles is to do short bursts of Evenity since the first months are the most bone-building. I could do 4 months again, two times. But will my doctor okay that/ Research is ongoing. He tends to wait for results. Good luck with negotiating and let us know!

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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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My endocrinologist wants me to start on prolia after my endocrinologist of Evenity holiday. I don't want to do this and suggested alendronate. He is against this because I was in alendronate for 5 years prior to evenity. I am wondering about risendronate instead. What about one course of prolia then back on Evenity. Ugh!!!! I absolutely hate this so stressful. Any ideas are most welcome. I took forteo prior to alendronate

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@windyshores

@awfultruth the problem is that research hasn't caught up with this idea. My doctors didn't even want me to do Evenity after Tymlos at all- just Reclast- and McCormick didn't suggest it either. Doing more than one year of Evenity has not been studied either. I am not afraid of cardiovascular effects but sclerostin has functions throughout the body.

This is moot for me because with GERD/reflux I cannot take risendronate or alendronate. McCormick did tell me risendronate is the weakest bisphosphonate (so should not be used after Prolia).

Tymlos isn't approved for a second year either. I only did 4 months Evenity so I still have 8 more to go. So another idea that has been mentioned in articles is to do short bursts of Evenity since the first months are the most bone-building. I could do 4 months again, two times. But will my doctor okay that/ Research is ongoing. He tends to wait for results. Good luck with negotiating and let us know!

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@windyshores you mentioned Tymlos isn’t approved for a 2nd year…that’s the maximum amount of time. Weren’t you on Tymlos before Evenity? And why were you limited?

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@gravity3

My endocrinologist wants me to start on prolia after my endocrinologist of Evenity holiday. I don't want to do this and suggested alendronate. He is against this because I was in alendronate for 5 years prior to evenity. I am wondering about risendronate instead. What about one course of prolia then back on Evenity. Ugh!!!! I absolutely hate this so stressful. Any ideas are most welcome. I took forteo prior to alendronate

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@gravity3 sorry for your complicated situation. I don't know your history other than what you just stated. Current and prior DXA's, any fractures, your age, reactions to previous osteo meds if any, and a timeline of what you did when and the result. Any comments I would make would just be suggestions of possibilities. Of course others would likely chip in.
What you are facing is what all of us taking osteo meds are facing or will be facing. That is none of these meds leads to a solution where you don't have to keep doing something else. You cannot safely take the bisphosphonates forever, some seem to think you can take Prolia forever but if you ever have to stop woe is you and the anabolics are for short term gain and something else has to be done to keep what you gained.
One question, what did you mean by an Evenity holiday?

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@dooshie

@windyshores you mentioned Tymlos isn’t approved for a 2nd year…that’s the maximum amount of time. Weren’t you on Tymlos before Evenity? And why were you limited?

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@dooshie sorry I meant a second course. It is taken for two years 🙂

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