1. < Osteoporosis & Bone Health

Evenity

Posted by bayhorse @bayhorse, Jan 14 12:46pm

Does anyone know whether Evenity is still contraindicated for people with cardiac issues? I know initially it was deemed a risk, but I either heard or read about a year ago that that had changed. If anyone has or knows where to find recent info, I'd appreciate hearing about it.

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susanew | @susanew | 3 days ago
In reply to @bayhorse "Do you have any cardiac issues, susanew?" + (show)
@bayhorse

Do you have any cardiac issues, susanew?

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No I do not 👍

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sedrake51 | @sedrake51 | 3 days ago
In reply to @bayhorse "Were the shoulder aches attributed to the Evenity?" + (show)
@bayhorse

Were the shoulder aches attributed to the Evenity?

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Absolutely. My physician even prescribed methy pred to combat the inflammation. Did not work. Again, the pain was horrific. Thought that I would never feel like myself again. I have read that others have had zero adverse reactions with Evenity. Fortunate!

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grammy9 | @grammy9 | 2 days ago
In reply to @bayhorse "Hi, windyshores, and sorry so long in thanking you for your reply to my question about..." + (show)
@bayhorse

Hi, windyshores, and sorry so long in thanking you for your reply to my question about Evenity. I saw my cardiologist this week; he googled the drug and said he didn't think it would be risky for me, but as I am terrified of the possibility of stroke, he is going to do a carotid study. I was very happy that Evenity might be an option for me... until the next day when I went to see my new endocrinologist. She said she had had two patient with no cardiac history who had heart attacks after being put on Evenity. Jeez Louise. I now don't know what to think. The endo is leaving the decision -- Prolia or Evenity -- up to me, but if I go with Evenity, she wants a statement first from my cardio that he okayed it. Obviously, she has concerns.

My cardiologist's attitude was that I am at such high risk for fracture that I should use anything possible, and I am worried about Prolia after reading so many Mayo Connect postings re: increased fracture risk if Prolia is stopped. I have spent nearly two years on Tymlos with little improvement, and have paid for that not only with big bucks but with nightly nausea and headaches. My fear is that I will have similar side effects with Prolia and have to quit. Do you happen to know if Prolia can be followed with Evenity? The new endo said it is most often followed with Reclast.

Thanks again for any help you can give!

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My endocrinologist told me she wanted me to do Reclast after Evenity.

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grammy9 | @grammy9 | 2 days ago
In reply to @bayhorse "Hi, windyshores, and sorry so long in thanking you for your reply to my question about..." + (show)
@bayhorse

Hi, windyshores, and sorry so long in thanking you for your reply to my question about Evenity. I saw my cardiologist this week; he googled the drug and said he didn't think it would be risky for me, but as I am terrified of the possibility of stroke, he is going to do a carotid study. I was very happy that Evenity might be an option for me... until the next day when I went to see my new endocrinologist. She said she had had two patient with no cardiac history who had heart attacks after being put on Evenity. Jeez Louise. I now don't know what to think. The endo is leaving the decision -- Prolia or Evenity -- up to me, but if I go with Evenity, she wants a statement first from my cardio that he okayed it. Obviously, she has concerns.

My cardiologist's attitude was that I am at such high risk for fracture that I should use anything possible, and I am worried about Prolia after reading so many Mayo Connect postings re: increased fracture risk if Prolia is stopped. I have spent nearly two years on Tymlos with little improvement, and have paid for that not only with big bucks but with nightly nausea and headaches. My fear is that I will have similar side effects with Prolia and have to quit. Do you happen to know if Prolia can be followed with Evenity? The new endo said it is most often followed with Reclast.

Thanks again for any help you can give!

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Did you have heart issues to begin with? I don't have a cardiologist.

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1 reply
bayhorse | @bayhorse | 2 days ago
In reply to @windyshores "@bayhorse you can also look up the FRAME and ARCH studies. There was no difference in..." + (show)
@windyshores

@bayhorse you can also look up the FRAME and ARCH studies. There was no difference in cardiovascular issues (including heart attack and stroke) between Evenity and placebo, but a small but statistically significant difference with alendronate. Articles propose that the latter result may be because alendronate is slightly protective.

Your endocrinologist's opinion seems unusual since I have talked to two endos and two cardiologists about Evenity with full go ahead and they are all in a top hospital system.

I can only repeat what my doctors tell me. They do not use Prolia unless absolutely necessary, due to the rebound when stopped. They do use Evenity, Forteo, Tymlos and bisphosphonates.

As for my unusual reactions, yes I have a systemic lupus diagnosis and very high antibodies for scleroderma. I react to foods, meds and scents. That said, doing the shots in my thighs seemed to help. Evenity has polysorbate 20 (not polyethylene glycol as I posted elsewhere, but chemically related). I would do Evenity again. My friends have done amazingly on it.

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Hi, again, windyshores, and again, thank you for the info. Would you mind saying again what your cardiac issue is? I know you mentioned it in an earlier post, but can't locate it.

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1 reply
windyshores | @windyshores | 2 days ago
In reply to @bayhorse "Hi, again, windyshores, and again, thank you for the info. Would you mind saying again what..." + (show)
@bayhorse

Hi, again, windyshores, and again, thank you for the info. Would you mind saying again what your cardiac issue is? I know you mentioned it in an earlier post, but can't locate it.

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@bayhorse I have atrial fibrillation which has a high risk of stroke from clots created during the arrythmia. On Tymlos for two years I did not have a single episode, for the first and only time. I had expected the faster heart beat after injection would be a trigger but it wasn't.

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bayhorse | @bayhorse | 1 day ago

@windyshores, you are brave to have tried Evenity given your clotting risk. I don't know if I have your courage; will keep researching and checking the sources you mentioned, for which I am very grateful.

I have an implanted pacemaker/defibrillator, and in spite of the pacing, Tymlos frequently upped my heart rate. The palpitations didn't last long, but were quite noticeable!

I have one other question you might be able to address: The endo I saw last week told me that there is a 6-month window of stability after stopping Prolia before the high risk of fracture starts. I thought patients went high risk, especially for spinal fracture, immediately after quitting Prolia. Do you have any info on this?

Thanks again for any help you can give.

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1 reply
patwerthman | @patwerthman | 1 day ago
In reply to @bayhorse "Hi, windyshores, and sorry so long in thanking you for your reply to my question about..." + (show)
@bayhorse

Hi, windyshores, and sorry so long in thanking you for your reply to my question about Evenity. I saw my cardiologist this week; he googled the drug and said he didn't think it would be risky for me, but as I am terrified of the possibility of stroke, he is going to do a carotid study. I was very happy that Evenity might be an option for me... until the next day when I went to see my new endocrinologist. She said she had had two patient with no cardiac history who had heart attacks after being put on Evenity. Jeez Louise. I now don't know what to think. The endo is leaving the decision -- Prolia or Evenity -- up to me, but if I go with Evenity, she wants a statement first from my cardio that he okayed it. Obviously, she has concerns.

My cardiologist's attitude was that I am at such high risk for fracture that I should use anything possible, and I am worried about Prolia after reading so many Mayo Connect postings re: increased fracture risk if Prolia is stopped. I have spent nearly two years on Tymlos with little improvement, and have paid for that not only with big bucks but with nightly nausea and headaches. My fear is that I will have similar side effects with Prolia and have to quit. Do you happen to know if Prolia can be followed with Evenity? The new endo said it is most often followed with Reclast.

Thanks again for any help you can give!

Jump to this post

Yikes. This is all very scary

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1 reply
windyshores | @windyshores | 1 day ago
In reply to @bayhorse "@windyshores, you are brave to have tried Evenity given your clotting risk. I don't know if..." + (show)
@bayhorse

@windyshores, you are brave to have tried Evenity given your clotting risk. I don't know if I have your courage; will keep researching and checking the sources you mentioned, for which I am very grateful.

I have an implanted pacemaker/defibrillator, and in spite of the pacing, Tymlos frequently upped my heart rate. The palpitations didn't last long, but were quite noticeable!

I have one other question you might be able to address: The endo I saw last week told me that there is a 6-month window of stability after stopping Prolia before the high risk of fracture starts. I thought patients went high risk, especially for spinal fracture, immediately after quitting Prolia. Do you have any info on this?

Thanks again for any help you can give.

Jump to this post

@bayhorse my lay person's reading of this https://pmc.ncbi.nlm.nih.gov/articles/PMC5915244/
is that yes meds to prevent rebound (bisphosphonates) should be started 6 months after the last Prolia shot. I would rely on your endo!

I think "immediately after stopping Prolia" would still mean 6 months after the last shot, since Prolia's action lasts that long. Again, sounds like you have a good endo.

I wasn't "brave" to try Evenity. I was satisfied that the study showing cardiovascular risk on Evenity being the same as placebo to be quite reassuring in that regard. That said, I had other concerns since sclerostin has functions throughout the body. But people are having truly amazing results.

Ineresting experience on Tymlos with a pacemaker!

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1 reply
windyshores | @windyshores | 1 day ago
In reply to @patwerthman "Yikes. This is all very scary" + (show)
@patwerthman

Yikes. This is all very scary

Jump to this post

@patwerthman I hope you don't continue to find the reports of heart attacks to be scary. We don't know the circumstances. A comparison with placebo did not show an increase in heart attacks or stroke, though a study comparing it with alendronate showed a difference, small but reported. That might be because alendronate is slightly protective but that has not been proven.

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