Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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@windyshores

I have worn my doctor down and am now going to consider Evenity after Tylos (then Reclast). He actually likes the way I try to customize treatment. I would love to read about anyone's experience with this sequence!

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Hi, I’m interested in your reasoning… I follow you on other threads and your research and wisdom are solid.
🌸

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@anjalima

Hi, I’m interested in your reasoning… I follow you on other threads and your research and wisdom are solid.
🌸

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hi @anjalima. I originally chose Tymlos with the idea that I could follow it with Evenity, but not the other way around. Then was surprised that all my docs declined to prescribe Evenity after Tymlos due to lack of data.

I had excellent gains in spine on Tymlos (20%, from severe to borderline) and good results in femur neck (9%) but it is still -3.6 (from -4.1 before). Evenity would further improve my scores and is better than Tymlos for hip, I have read.

I talked with Keith McCormick today as another opinion and he said "we have to get you out of the woods so you don't fracture again." I have 7 spinal fractures, half of them clearly osteoporotic and half from a traumatic fall in 2006.

I am nervous about Evenity and joint pain especially in my spine/back/shoulder/neck. McCormick said 40% of his patients report joint pain. And nervous about kidneys with Reclast, with a nephrologist who is scary on the topic. I sure don't want to lose gains from Tymlos and would prefer to gain more!

One interesting fact: many meds need to be spaced at least a week or two from vaccines....

I have been having increased afib. I had it today with a heart rate of 194. My spine is shortened and when I lift things, my innards seem to shift around and pressure my heart. That's how it feels. Even worse if I eat after lifting. Fractures cause pain and disability but this is an example of another problem: less room inside your torso!

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@windyshores

hi @anjalima. I originally chose Tymlos with the idea that I could follow it with Evenity, but not the other way around. Then was surprised that all my docs declined to prescribe Evenity after Tymlos due to lack of data.

I had excellent gains in spine on Tymlos (20%, from severe to borderline) and good results in femur neck (9%) but it is still -3.6 (from -4.1 before). Evenity would further improve my scores and is better than Tymlos for hip, I have read.

I talked with Keith McCormick today as another opinion and he said "we have to get you out of the woods so you don't fracture again." I have 7 spinal fractures, half of them clearly osteoporotic and half from a traumatic fall in 2006.

I am nervous about Evenity and joint pain especially in my spine/back/shoulder/neck. McCormick said 40% of his patients report joint pain. And nervous about kidneys with Reclast, with a nephrologist who is scary on the topic. I sure don't want to lose gains from Tymlos and would prefer to gain more!

One interesting fact: many meds need to be spaced at least a week or two from vaccines....

I have been having increased afib. I had it today with a heart rate of 194. My spine is shortened and when I lift things, my innards seem to shift around and pressure my heart. That's how it feels. Even worse if I eat after lifting. Fractures cause pain and disability but this is an example of another problem: less room inside your torso!

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Windyshores thank you. Interesting path re: BMD. I do hope you get the Afib under control and gain back more bone density. Your research and knowledge is impressive.

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@windyshores

I have worn my doctor down and am now going to consider Evenity after Tylos (then Reclast). He actually likes the way I try to customize treatment. I would love to read about anyone's experience with this sequence!

Jump to this post

Hi @windyshores
So I took Prolia from the beginning of my diagnosis. I am not sure about the time- could be 4 years. Anyway, I broke my femur in 2021 and then after a few months break I was put on Teripartide. But had to stop after 6 months as I had reactions. Then another small break and now on Tymlos.
My 2 years are up in January. My Dr is either thinking to put me back on Prolia or Reclast. Has anyone ever taken Prolia again after a fracture? Right femur fracture is a side effect of Prolia. Anyone experience this situation? Would appreciate some insight. 🙏

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@lauratys

Thank you for posting. We do seem to be the few who have this issue. I’m sorry you are having this issue as well and we just have to keep moving and try to find something that helps without adverse reactions. I’m 67 and refuse to give up the physical activities I love and are good for me! Hopefully the Actonel will work and as I said I’ll post after I try it. I can’t even get in and out of the car without discomfort at the moment🙃

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How are you feeling? Is your hip pain any better?

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I think it very interesting that many on Evenity complain of joint pain. After my 4th shots I went for a jog and felt fantastic. However, the next morning I had so much pain in one knee. I went to urgent care. I was referred to a physical therapist. Anyway, to get to the point, I came across an explanation of this in Dr. McCormick’s Great Bones. On page 557 under ‘Technically Speaking’ he explains that sclerostin is inhibited by Evenity. However, sclerostin is needed whenever cartilage is injured. Therefore it takes longer to heal. Anyway read it for yourself.
Just this past week I went to my doctor and requested a CTX and P1NP. I might as well have been speaking Chinese! It’s just awful that we have to do all the investigating and yet there is no help. I’m seriously thinking of contacting Dr. McCormick but it seems he wants a lot of background information. Can anyone who has communicated with him tell me how the visit via phone or zoom went? Is it better to see him in person?
Thank all of you for the insight you present. I am in eastern Massachusetts. I asked my doctor (actually a nurse practitioner) about getting a TBS and that was another Chinese word for her. Is it easy to get one?

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@windyshores

I have worn my doctor down and am now going to consider Evenity after Tylos (then Reclast). He actually likes the way I try to customize treatment. I would love to read about anyone's experience with this sequence!

Jump to this post

My Dexa numbers put me in the Severe category, hip and spine. I have never fractured but I did have a very traumatic fall 6 years ago and broke my hip. So I guess you could say I did fracture. But I just finished 2 years of Forteo and will be starting Evenity in 3 weeks. I'm very fearful of the side effects. Forteo did very little for me, I remained stable but no real increases in density.

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@ann707

How are you feeling? Is your hip pain any better?

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So I haven’t taken any bisphosphonate in three weeks and went to PT. I’m feeling better. Switching to Actonel next week to see if that is better than Fosomax for me. In the middle of this had to have rotator cuff surgery this week so a few variables!

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@suga

I think it very interesting that many on Evenity complain of joint pain. After my 4th shots I went for a jog and felt fantastic. However, the next morning I had so much pain in one knee. I went to urgent care. I was referred to a physical therapist. Anyway, to get to the point, I came across an explanation of this in Dr. McCormick’s Great Bones. On page 557 under ‘Technically Speaking’ he explains that sclerostin is inhibited by Evenity. However, sclerostin is needed whenever cartilage is injured. Therefore it takes longer to heal. Anyway read it for yourself.
Just this past week I went to my doctor and requested a CTX and P1NP. I might as well have been speaking Chinese! It’s just awful that we have to do all the investigating and yet there is no help. I’m seriously thinking of contacting Dr. McCormick but it seems he wants a lot of background information. Can anyone who has communicated with him tell me how the visit via phone or zoom went? Is it better to see him in person?
Thank all of you for the insight you present. I am in eastern Massachusetts. I asked my doctor (actually a nurse practitioner) about getting a TBS and that was another Chinese word for her. Is it easy to get one?

Jump to this post

@suga I am also in eastern MA and did my first appointment in person. A few years later I went back in person again, as I was finishing Tymlos. I feel as if I established a better connection that way especially since he does phone visits as follow up, not Zoom.

I love my endo but also got a second opinion endo recently.

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Just had my second shots. This time no soreness. No other noticeable side effects. Too soon to know about results. My doc wants me to follow this with prolia but I reluctant. Would prefer to use alendronate which had no side effects when I took it after two years of forteo......also no side effects with forteo.

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