Would like to know your experience with Evenity

Posted by davi1 @davi1, Apr 12 5:44pm

Hi I have severe osteoporosis. I am thinking of going on Evenity and need to build up my bones before a much need knee replacement. I would appreciate it if anyone out there who has been on Evenity can tell me what your experience has been. The black box warning scares me but I don't feel like I have a choice as there are only 2 anabolic bone building drugs at this time and that's what my dr. said I need before the knee replacement. They both recommended Evenity. I don't have any heart issues other than having high cholesterol. My dr. wants me to consider going on a statin.

Thank you

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Profile picture for broken13 @broken13

@davi1 Your situation seems to warrant the big guns. I think you need to listen to your experts on this one. I've now been on Forteo and recently just doing full round of Teriparatide. Both times I have gained weight but also bone density. Both times it has been 8-10 pounds and I lost it after the first time with Forteo and I expect I will loose it again this time when I am done. Wishing you all the very best in your treatment and recovery.

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@broken13 Thank you. I appreciate your thoughts. Wishing you the best also.

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Profile picture for sstopalian @sstopalian

@cndstegle No drug is 100% safe. need to weigh the pros and cons and one's health issues. No cardiac issues, kidney issues, etc. My infusion center has a nurse practitioner who is excellent and available. So far the only issue I had is a raised rash and itchiness helped with cold compresses, lightheadedness ( might be from coffee?), an spasms in my back which were helped with a warm shower and stretching. I learned from my NP that evenity absorbs best when injected in the abdomen.

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Evenity caused me to start losing my memory, etc. i couldn't even remember the name of one of my best friends o was dining with and who was seated across the table. My osteoporosis specialist confirmed that Evenity the cause and took me off it. After a few weeks that and other side effects went away

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I'm so sorry to hear that. Glad your dr. took you off of it. Did you have any other conditions besides osteoporosis before starting the drug? What other side effects did you have?

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https://pmc.ncbi.nlm.nih.gov/articles/PMC12619143/
I am in the same boat - severe osteoporosis and need a knee replacement. This study above explains the increased risks for us. I’m currently taking Teriparatide. I’m very hesitant to go ahead with replacement but getting to the point of unbearable pain. I am concerned with a bad outcome.

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Profile picture for samantha88 @samantha88

https://pmc.ncbi.nlm.nih.gov/articles/PMC12619143/
I am in the same boat - severe osteoporosis and need a knee replacement. This study above explains the increased risks for us. I’m currently taking Teriparatide. I’m very hesitant to go ahead with replacement but getting to the point of unbearable pain. I am concerned with a bad outcome.

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@samantha88 Thank you for responding and including the study link. I didn't get through it all. I am also concerned about the possibility of a bad income. This ordeal has been so stressful. How are you doing with the Teriparatide? Any side effects. That's the 2 year daily injection drug right? My Dexa showed -4.7 in spine and -3.6 R Femur, -2.7 L I've seen 3 endos due to change of insurance. They all said I should take Evenity which is 2 injections every month for one year. I have one more test to take to see if I will be ok on that drug. The only risk factor I have is high cholesterol. My dr. just put me on a very low dose statin which we will monitor. Other than that I don't have any comorbidities that I am aware of. And both my knees are in the Advanced stage (bone-onbone). Just recently got Genvisc 3 shot series for my knees. Not sure if it's helping yet.

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Profile picture for samantha88 @samantha88

https://pmc.ncbi.nlm.nih.gov/articles/PMC12619143/
I am in the same boat - severe osteoporosis and need a knee replacement. This study above explains the increased risks for us. I’m currently taking Teriparatide. I’m very hesitant to go ahead with replacement but getting to the point of unbearable pain. I am concerned with a bad outcome.

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@samantha88 I have osteoporosis and need a total knee replacement (TKR). That is a GREAT article. But my response to it is wanting to jump into my TKR sooner.

One of the statistics in that article says "Osteoporotic patients [have] higher risks of ... periprosthetic fracture ...". Well, duh! Us osteoporosis folks have higher risk of ALL fractures. It would be a miracle if we didn't have more of this kind than the non-OP folks. It still seems pretty amazing that our risk of this fracture is only 2.13x, rather than like 10x , the risk of the non-OP patients.

In that paper the risk of periprosthetic fracture for we with OP is still only 9 in 10,000 knee replacements. That is about the highest increased risk that we have according to table 4.

Right now I am limping along (pun intended) with hyaluronic acid injections. They make life so wonderful! But only for a few months. I run and jump and ski and rush downstairs etc. while laughing aloud about it. Gradually the benefit wears off and I become more like a stereotypical old lady again. The chance of getting a knee that feels wonderful is so much higher than the chance (risk) of it going very badly with knee replacement. And our odds of TKR going badly are not that much worse than anyone getting a TKR according to that paper.

I'm in, bring it on!

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Evenity before reverse shoulder replacement... 2 injections . What has helped is to stay dehydrated before and after, make sure to eat and drink foods with electrolytes. No coffee morning before. Had no sx. Injections in and, absorb better.

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My body hurts bad after 5 Evenity shots. I can barely use my arms at all, just hurts all the time

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Profile picture for angie37167 @angie37167

My body hurts bad after 5 Evenity shots. I can barely use my arms at all, just hurts all the time

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@angie37167

And what does your endocrinologist say about your pain?

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Profile picture for davi1 @davi1

@samantha88 Thank you for responding and including the study link. I didn't get through it all. I am also concerned about the possibility of a bad income. This ordeal has been so stressful. How are you doing with the Teriparatide? Any side effects. That's the 2 year daily injection drug right? My Dexa showed -4.7 in spine and -3.6 R Femur, -2.7 L I've seen 3 endos due to change of insurance. They all said I should take Evenity which is 2 injections every month for one year. I have one more test to take to see if I will be ok on that drug. The only risk factor I have is high cholesterol. My dr. just put me on a very low dose statin which we will monitor. Other than that I don't have any comorbidities that I am aware of. And both my knees are in the Advanced stage (bone-onbone). Just recently got Genvisc 3 shot series for my knees. Not sure if it's helping yet.

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@davi1
I am someone who ends up with side effects from all medications, so you can’t go by me - that being said, the first 5 months of Teriparatide were very hard to tolerate. The Worst side effect was 24/7 nausea. After 5 months, side effects lessened a bit. I am still having side effects but a more tolerable level. No matter what (assuming it doesn’t raise my calcium level too high) I’m going to power through whatever side effects are coming.

My spine is -4 and hip 3.6.

Most of the cartilage is gone in my knee but I also have osteonecrosis in that knee, further complicating things.

I was hoping to wait for another year before knee replacement thinking my outcome might be better after I made some new bone, but I am not sure I can make it that long. I’m taking things one day at a time.

I think I would be less concerned if my bone density was better than -3.0. It’s really a crapshoot I think with bone density as bad as ours. I just don’t want to get myself into a situation where it’s nonstop problems after the knee replacement and have a lot of regrets. There’s no turning back at that point. All the surgeries I’ve had over the years always ended up with issues, such as long healing times. I just don’t react the way most people do to medications and surgery, which gives me further caution in my case.

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