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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@sunny65

Yes. I can find $350 if this can halo me. They telling me that doctors know the best. Not sure if this applies to me . I been going to doctors for over 6 months and I getting worse. I think I might allergic to Evenity because my all neck has red patches and they come and go. Last time I just have a half dose and it is still the same. I was originally prescribed Tymlos but my first doctor didn’t submit needed paperwork to insurance for two months. That’s how I ended with different doctor and got Evenity. The biggest problem is that my fractured vertebrae ( even this is healed) doesn’t want to hold my 106 lb weight and it feels like my spine is braking in a half. My knees are numb and hurting so bad. How did this all happen is such a short 6 months? Do you know how to reach Dr. McCormick?

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I think I found his phone number. What is the wait time for phone conversation?

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@sunny65

I think I found his phone number. What is the wait time for phone conversation?

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@sunny65 tell the person answering the phone (Pat) that your DEXA score is -5.1. Ask to be on a cancellation list. Call every once in awhile to check for spots but make an appointment. Good luck!

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@susanfalcon52

Some people go on Reclast after Evenity. That’s what I did. There are other options.
I couldn’t take any of the oral meds due to gerd, so chose Reclast. It’s an annual or every year infusion.
I had it in June 2024. No problems.
By the way, I had good improvements in spine and hip with the Evenity.
Also, I had a pretty bad fall a couple of weeks ago. I’m black and blue from head to foot on left side. I have a shiner, elbow bruised, hip and knee bruised. But, no broken bones.

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Hi, I went on Actonel after trying Fosomax which brought back pain/aches/stiffness that I had after 6 months on Evenity. I completed 11 months of Evenity but feel like I had ruined my mobility. I'm in late 60s. Had never broken a bone or had any physical limitations or taken meds but -3.8 spine which was a problem before Evenity. Went to -2.1 which is great. Much smaller gains in other two sites but brought me out of osteoporosis range. I don't have a DEXA until Fall 2025 but doing the Actonel, always exercise and am trying to do more weight bearing/strengthening as I prefer cardio! Still have muscles aches I've never had prior to meds.

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@gmom14

Well, I finally decided to give Evenity a go, Had my first shots on Wednesday . Thankfully, I'd say it was like any other vaccine shot that I have ever gotten. Took about half a minute each arm. I felt slightly lightheaded for a few minutes then I was off and running. Took it easy in the pm. Fell asleep easily enough, and slept like a log. The next day, with the exception of soreness at the injection site, I felt good! Back to exercise etc. So far, so good...one down...11 to go! 🙏

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How's the Evenity going for you now that you've had several shots?

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@lauratys

Hi, I went on Actonel after trying Fosomax which brought back pain/aches/stiffness that I had after 6 months on Evenity. I completed 11 months of Evenity but feel like I had ruined my mobility. I'm in late 60s. Had never broken a bone or had any physical limitations or taken meds but -3.8 spine which was a problem before Evenity. Went to -2.1 which is great. Much smaller gains in other two sites but brought me out of osteoporosis range. I don't have a DEXA until Fall 2025 but doing the Actonel, always exercise and am trying to do more weight bearing/strengthening as I prefer cardio! Still have muscles aches I've never had prior to meds.

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@lauratys that is an amazing gain in spine! How long ago did you finish Evenity? McCormick, author of "Great Bones," told me that 40% of his patients have joint pain on Evenity. Makes sense when you read about sclerostin. The pain may improve: let us know!

But those gains, wow!

How long do you plan on staying on Actonel? Can you take a drug holiday after a year or two and try holistic approaches?

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@windyshores

@lauratys that is an amazing gain in spine! How long ago did you finish Evenity? McCormick, author of "Great Bones," told me that 40% of his patients have joint pain on Evenity. Makes sense when you read about sclerostin. The pain may improve: let us know!

But those gains, wow!

How long do you plan on staying on Actonel? Can you take a drug holiday after a year or two and try holistic approaches?

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Finished Evenity Feb 2023. In April 2023 started Fosomax. I was told to take a couple months break as I could barely get on a pair of yoga pants as I was so uncomfortable. I felt brittle everywhere. A lot of muscle pain all over including arms and then wrists, hands…Was not going to do Reclast and have something in my body for a year after greatly reducing my mobility on Evenity. Too much of an unknown for me personally. Started Actonel Oct 2023. No DEXA since March 2023 which I self paid as I wanted results immediately after stopping Evenity. I think Actonel will be 3-5 years depending on DEXA next Fall. The PA I see told me no one she has prescribed Evenity for has had issues like I have had. Made me feel like I was crazy but luckily my daughter is a med professional and knows me and was encouraging as she knew it wasn’t in my head! I was glad to find this group and the 40% Mc Cormick sees effects in are making me feel not so much like a crazy person as well. I am not a complainer but Evenity has changed my flexibility for sure. Hoping to get it back with stretching which I’ve not done too much of until post Evenity and consistent exercise which I’ve always done. Best regards!

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@lauratys

Finished Evenity Feb 2023. In April 2023 started Fosomax. I was told to take a couple months break as I could barely get on a pair of yoga pants as I was so uncomfortable. I felt brittle everywhere. A lot of muscle pain all over including arms and then wrists, hands…Was not going to do Reclast and have something in my body for a year after greatly reducing my mobility on Evenity. Too much of an unknown for me personally. Started Actonel Oct 2023. No DEXA since March 2023 which I self paid as I wanted results immediately after stopping Evenity. I think Actonel will be 3-5 years depending on DEXA next Fall. The PA I see told me no one she has prescribed Evenity for has had issues like I have had. Made me feel like I was crazy but luckily my daughter is a med professional and knows me and was encouraging as she knew it wasn’t in my head! I was glad to find this group and the 40% Mc Cormick sees effects in are making me feel not so much like a crazy person as well. I am not a complainer but Evenity has changed my flexibility for sure. Hoping to get it back with stretching which I’ve not done too much of until post Evenity and consistent exercise which I’ve always done. Best regards!

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2lauratys doctors say that so often: that they haven't seen that side effect in anyone else. I think they need to train about this in medical school! I have heard of doctors saying this about side effects that are clearly listed as a common one on drugs.com or the pharmacy insert.

I am stiffer after 4 months of Evenity and stopped, for a few reasons, You might want to read about sclerostin and low levels in osteoarthritis. I have wondered too if bone spurs become more of a problem. Good luck!

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Thank you for the insights. I will look into this. L.

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@windyshores

2lauratys doctors say that so often: that they haven't seen that side effect in anyone else. I think they need to train about this in medical school! I have heard of doctors saying this about side effects that are clearly listed as a common one on drugs.com or the pharmacy insert.

I am stiffer after 4 months of Evenity and stopped, for a few reasons, You might want to read about sclerostin and low levels in osteoarthritis. I have wondered too if bone spurs become more of a problem. Good luck!

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Is there a drop box or can he just come up to the office? Hours in which he can stop by?

Yahoo Mail: Search, Organize, Conquer

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@lauratys

Hi, I went on Actonel after trying Fosomax which brought back pain/aches/stiffness that I had after 6 months on Evenity. I completed 11 months of Evenity but feel like I had ruined my mobility. I'm in late 60s. Had never broken a bone or had any physical limitations or taken meds but -3.8 spine which was a problem before Evenity. Went to -2.1 which is great. Much smaller gains in other two sites but brought me out of osteoporosis range. I don't have a DEXA until Fall 2025 but doing the Actonel, always exercise and am trying to do more weight bearing/strengthening as I prefer cardio! Still have muscles aches I've never had prior to meds.

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So sorry to hear about your mobility. Did you regain it after completing evenity?

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