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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@kallettla

This is very interesting. I am 67. My choices were Forteo or Evenity. Since I have had breast cancer twice, my oncologist and endochronologist chose Evenity. Dr McCormick wanted me to do Forteo. But I don't want any chance of bone cancer. I just had a nuclear stress test and blood work prior to Evenity, which delayed me three months. My CT calcium score is 0. I just got cleared for the injections and will start Tuesday! My blood calcium was checked and needs to be checked prior to every injection.

It is all very nerve-racking and confusing, but mostly I am excited to be able to start it.

Best wishes to you.

Jump to this post

The bone cancer warning has been lifted for Forteo. Not a single human has developed bone cancer on Forteo. The rats were given very large doses in the studies.

I saw some concern about cancer for Evenity somewhere too. It would take some digging to find but I'll try. I believe it was theoretical and not from studies with rats.

I have had breast cancer (once) and was okay with either of these, or Tymlos. If I had any metastasis, I would not take either Forteo or Evenity.

REPLY
@windyshores

It helped me to read the actual studies. Cardiovascular effects were the same in a study comparing Evenity to placebo. They were slightly worse with Evenity than alendronate but the report hypothesized that that could be because alendronate is slightly protective.

Evenity inhibits sclerostin and sclerostin has effects throughout the body, including blood vessels. I have read that more studies are needed on other aspects of sclerostin function that might be affected and there was too much focus on cardiovascular effects. I am more concerned about other effects, such as a possible reduction in acquired immunity (B cells produced in bone marrow). Not much is known as yet.

Most people seems to be doing fine on Evenity and it seems as if post- FDA approval reporting is not revealing a lot of new problems. (I am one of the few I know who is actually having side effects...)

Jump to this post

I think that of the two studies that have been done, FRAME and ARCH, one showed a hightened risk of major acute cardiovascular events, and the other did not. The one that involved older subjects it the one that showed a risk.

REPLY

So that may be the problem. My doctor seems very conservative and I am not sure whether I like this all the time or not.

REPLY
@windyshores

The bone cancer warning has been lifted for Forteo. Not a single human has developed bone cancer on Forteo. The rats were given very large doses in the studies.

I saw some concern about cancer for Evenity somewhere too. It would take some digging to find but I'll try. I believe it was theoretical and not from studies with rats.

I have had breast cancer (once) and was okay with either of these, or Tymlos. If I had any metastasis, I would not take either Forteo or Evenity.

Jump to this post

Thanks for that info!

Best wishes.

REPLY
@windyshores

It helped me to read the actual studies. Cardiovascular effects were the same in a study comparing Evenity to placebo. They were slightly worse with Evenity than alendronate but the report hypothesized that that could be because alendronate is slightly protective.

Evenity inhibits sclerostin and sclerostin has effects throughout the body, including blood vessels. I have read that more studies are needed on other aspects of sclerostin function that might be affected and there was too much focus on cardiovascular effects. I am more concerned about other effects, such as a possible reduction in acquired immunity (B cells produced in bone marrow). Not much is known as yet.

Most people seems to be doing fine on Evenity and it seems as if post- FDA approval reporting is not revealing a lot of new problems. (I am one of the few I know who is actually having side effects...)

Jump to this post

Thank you, @windyshores, for your post about the possible reduction in acquired immunity with Evenity. I am on Tymlos, but the endocrinologist plans to take me off due to hypercalciuria, and transition to Evenity. I have looked into this area of research since your post and will take this under consideration before I make a final decision about Evenity.

REPLY

The possible reduction in acquired immunity is of concern to me. With cll and low globulin level, I am supposed to try to keep my immunity up.

REPLY
@imay

I think that of the two studies that have been done, FRAME and ARCH, one showed a hightened risk of major acute cardiovascular events, and the other did not. The one that involved older subjects it the one that showed a risk.

Jump to this post

@imay the one comparing Evenity and alendronate showed increased risk (not large, but reported) and the study speculates that it might be because alendronate is slightly protective.

The one comparing Evenity and placebo showed no difference in cardiovascular risk.

As I wrote before, I am more concerned with aspects of Evenity that need further study, such as bone marrow edema and lower B cell production.

REPLY

@marymj7 and @normahorm please ask your doctor about the immunity issue (B cells). Keith McCormick told me this and the studies I found on this online may or may not have been peer reviewed. Another option that some of us have seen studies on is to do Evenity for the time when it is bone-building (3-6 months) and then switch to a bisphosphonate. This is NOT a sanctioned protocol as yet but it could be discussed with your doctor. I was warned that Prolia could affect my immune system but none of my docs have expressed that concern, only McCormick (in Great Bones and on the phone). And there is info online: B cells are produced in the bone marrow. I am not a trained person so it is important to check this possibility with a physician!

REPLY
@windyshores

I am having a lot of neurological side effects. I want to emphasize this is unusual. Numbness, pins and needles, pain, dreams, fatigue and most of all, burning sensations all over and especially chest. I decided to post this in case anyone else has this. I had two shots then one shot, and last time was one shot. I would say that the symptoms are progressive. So if anyone does have these- unlikely as it is- don't think that they will improve with continued exposure. Continued exposure at low dose followed by gradual increases, helped me with Tymlos but not Evenity.

Jump to this post

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!

REPLY
Please sign in or register to post a reply.