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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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davi1 | @davi1 | May 2 11:39am
In reply to @samantha88 "@davi1 I am someone who ends up with side effects from all medications, so you can’t..." + (show)
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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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@samantha88
I hear you. I sympathize with what you're going through. I've only had a few surgeries. I had a rhinoplasty in 2005 and the dr. had to do a re-do cuz he messed up. He was a renowned dr. in his field. I had to wait 9 mos. to get it redone. I also had some sclerotherapy done and the dr. inserted the sclerosant outside the vein and I ended up with a venous ulcer. Ugly looking scar. I had two meniscectomies back in 2005 and 2009 left & right knees. I was doing fine until I was taking a low impact aerobics class in Dec. 2023 when I moved the wrong way (dr. back in 2009 said no twisting or turning) and both my ACL & meniscus tore. I am 70 now and it goes without saying that healing is not going to be like it was in my 20's or 30's. My endo says I should wait a minimum of 6 mos. on Evenity before I have the tkr. I just finished up my 3 shot series of Genvisc viscosupplementation and it seems to be helping somewhat. I feel like I don't have a choice but to go on Evenity and get a tkr. I have severe osteoarthritis of both knees so more than likely will be getting the other one done. I've never taken any medicine up until now. My pcp just put me on a low dose statin for high ldl levels and I will more likely go on Evenity, I'm hoping in June after my app't with endo to discuss results of lab tests b4 I go on Evenity. I had an MRI done recently and will be meeting with PA to discuss results. I know I'm a grade 3-4 and may be worse now. I can let you know results...

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mshepard1 | @mshepard1 | May 4 7:24am
In reply to @pt109 "Evenity caused me to start losing my memory, etc. i couldn't even remember the name of..." + (show)
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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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@pt109 Thanks for info regarding Evenity. Heading to Endocronologist for first time this month. Sorry for jumping in here but need to know what you guys recommend for osteoporsis and arthritis!

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