1. < Osteoporosis & Bone Health

Evenity cardiac and stroke side effects update

Posted by serious @serious, Mar 15 7:10am

Does anyone have an update this year, 2024, on these side effects? Has there been new studies or new ways of detecting who might be adversely affected by these effects on using Evenity ahead of time?

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windyshores | @windyshores | Mar 17 6:53am
In reply to @dinawashere "I have small fiber polyneuropathy which is numbness burning ect through my entire body. My dr..." + (show)
@dinawashere

I have small fiber polyneuropathy which is numbness burning ect through my entire body. My dr had been pushing evenity for me but I have had to put off anything due to teeth extraction and dentures. I am very worried about the side effects of evenity as far as heart problems because my small fiber causes many autonomic issues and now reading about your symptoms I am rethinking this. Thanks for your post!

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@dinawashere it might be worth trying. You could try one shot. Or you could do Tymlos, which is what I did first. You can have extractions with Tymlos (it might even help healing). Many of us got on Tymlos by starting with a low dose and moving it up to help our bodies adjust.

I have preexisting "paresthesias" since 2001 but the burning is new. It did fade after a month or so on one shot and am hoping it fades again. Sorry you have this!

I am happy to alert folks but also don't want to scare anyone!

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dinawashere | @dinawashere | Mar 18 8:55am

Thanks for your reply!

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timely | @timely | Mar 19 2:23pm

When I went to see an osteoporosis specialist, the only one they have at a major teaching hospital and large medical system is a young NP, no MD…

I have arrhythmia and take Letrozole.

She said my only choice was Prolia which I refused.

I have had allergic reactions to so many meds, including the chemical stress test infusion and 2 of the eye dialating drops used in eye exams and cataract surgery.

So, at this point, I am taking nothing as are some other women.

The BP at the medical oncologist just mentioned that I was not taking it and said nothing.
I see the medical oncologist in April and she may bring it up.

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1 reply
windyshores | @windyshores | Mar 19 3:05pm
In reply to @timely "When I went to see an osteoporosis specialist, the only one they have at a major..." + (show)
@timely

When I went to see an osteoporosis specialist, the only one they have at a major teaching hospital and large medical system is a young NP, no MD…

I have arrhythmia and take Letrozole.

She said my only choice was Prolia which I refused.

I have had allergic reactions to so many meds, including the chemical stress test infusion and 2 of the eye dialating drops used in eye exams and cataract surgery.

So, at this point, I am taking nothing as are some other women.

The BP at the medical oncologist just mentioned that I was not taking it and said nothing.
I see the medical oncologist in April and she may bring it up.

Jump to this post

@timely was a bisphosphonate discussed? I took letrozole for 5 years and at the time my endo was concerned about my afib and so he and the oncologist did not protect my bones. I lost a lot of density. Now they tell me there is no longer a concern about Reclast and afib, and I wish I had been on it. I am sensitive to everything and Tymlos rescued me but I could have avoided so much bone loss.

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1 reply
timely | @timely | Mar 19 10:04pm
In reply to @windyshores "@timely was a bisphosphonate discussed? I took letrozole for 5 years and at the time my..." + (show)
@windyshores

@timely was a bisphosphonate discussed? I took letrozole for 5 years and at the time my endo was concerned about my afib and so he and the oncologist did not protect my bones. I lost a lot of density. Now they tell me there is no longer a concern about Reclast and afib, and I wish I had been on it. I am sensitive to everything and Tymlos rescued me but I could have avoided so much bone loss.

Jump to this post

No. This was last June and the NP insisted that Prolia was the only answer for someone with arrythmia and that any other choices would also cause blood clots and strokes. ($5,000 per shot without insurance) and you can never stop taking it. She would put me on Prolia forever.

I had read on the Inspire site of a woman who was 52 and did not get her Prolia infusion on time and then went on to have multiple rib fractures and a total nightmare situation.

I walked out of there and told her no. I felt like I was dealing with someone promoting Prolia and pharmaceuticals....

I realize that I have to address this soon. Have dealt with 2 other health issues in this time span.

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1 reply
windyshores | @windyshores | Mar 20 5:46am
In reply to @timely "No. This was last June and the NP insisted that Prolia was the only answer for..." + (show)
@timely

No. This was last June and the NP insisted that Prolia was the only answer for someone with arrythmia and that any other choices would also cause blood clots and strokes. ($5,000 per shot without insurance) and you can never stop taking it. She would put me on Prolia forever.

I had read on the Inspire site of a woman who was 52 and did not get her Prolia infusion on time and then went on to have multiple rib fractures and a total nightmare situation.

I walked out of there and told her no. I felt like I was dealing with someone promoting Prolia and pharmaceuticals....

I realize that I have to address this soon. Have dealt with 2 other health issues in this time span.

Jump to this post

As I wrote, I have atrial fibrillation (paroxysmal) with heart rate up to 200, and all my docs want me on Reclast (after Tymlos in my case). Neither of my endocrinologists use Prolia if they can help it because it is so risky when you stop. I hope you find a second opinion. The issue of arrhythmia with Reclast has been disproven, I was told. Also you can have IV hydration, a slow infusion and do a lower "test dose."

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