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My Experience with Evenity

Posted by ella5321 @ella5321, Jan 16, 2024

I just finished my 12th set of Evenity injections today. I wanted to share my experience with other people who are considering starting Evenity or are already receiving the injections.

Cost and Ordering
My Medicare Advantage Plan covered most of the cost of the medication, and it was authorized very quickly. My out of pocket cost for all the medication was about $2800. My copayments varied depending on which coverage stage I was in. I used my insurance company’s online pharmacy, and the syringes were shipped to my doctor’s office. I never had to pay for the administration of the medication, which was always done by a medical assistant. I saw my doctor several times during the 12 months. The last visit was to go over what happens next.

Side Effects
I experienced some of the side effects listed on Amgen’s website, although not all at the same time. I reported the side effects to my doctor and to Amgen. The side effects included injection site pain, bone pain, joint pain, muscle pain, eczema-like rashes, and fever. I never considered stopping the treatment due to the side effects. The majority of the side effects that I experienced didn’t last very long after each set of injections- sometimes just a day or two. The eczema-like rashes lasted a couple of months.

After Evenity
The next steps are a bone density scan and Prolia injections which are once every 6 months. I’m not sure how long I will be on Prolia.

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

Profile picture for hammondp2
hammondp2 | @hammondp2 | Oct 3 9:36am
In reply to @hammondp2 "@lauratys I am glad you feel back to normal. So did you stop after your 11th..." + (show)
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@lauratys
I am glad you feel back to normal. So did you stop after your 11th injection?
Did you have so much pain that you couldn't do anything.
The pain is so bad and it is constant. Not sure if it works. Between the price of this drug and the pain that I have to endure, I certainly hope it makes a big healthy difference.

I am trying not to quit. I am going to see my heart doctor. He is trying to help me figure out why I have so much pain. My endocrinologist that prescribed Evenity is not helping me. Our doctors really need to try Evenity before they prescribe this drug. You have to try this medicine and experience the pain before they get a kickback and ruin our life.

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I totally agree. I haven't been able to walk with the severe pain. My endocrinologist has not helped me either. My heart doctor is more helpful.
I had breast cancer in 2023 so I can only have the injections on my right side of my body.
My thigh was swelling up after each injection and I really believe it has caused me to have severe tendonitis.
I just had my 8th injection and I had both injections in my right arm. The severe pain subsided a few weeks after.
I called Evenity and they were no help.

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hammondp2 | @hammondp2 | Oct 3 9:38am
In reply to @lauratys "@hammondp2 Good morning, It became difficult to do everyday things like putting on a pair of..." + (show)
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@hammondp2 Good morning, It became difficult to do everyday things like putting on a pair of yoga pants etc. Aching and joint pain everywhere. Got better throughout the day but never fully resolved. I stopped after 11 months and switched to bisphosphonate. Fosomax brought back all the pain but have been fine on Actonel monthly.

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My friend is a dental hygienist. She warned me to stay away from bio phosphates. It causes jaw rot.

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hammondp2 | @hammondp2 | Oct 3 9:41am
In reply to @lauratys "@hammondp2 You may already know this but the first bone building benefits are in the first..." + (show)
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@hammondp2 You may already know this but the first bone building benefits are in the first 6 months. I had somewhat debilitating muscle/bone pain after 6-7 months but kept going for 11 months. I sometimes wish I had quit around 8 months but all pain started to go away after ending Evenity but it took several months. I was taking it for bone building so could have stopped earlier maybe and taken something to lock in gains then. I didn't have any pain or mobility issues before taking Evenity but while on it thought I had ruined my health! It was anxiety producing for sure and I was told what I was experiencing was unrelated to Evenity until I found info at this website. Not everyone experiences this adverse reaction. Thank God that I am back to "normal" now and keeping up with risedronate sodium, diet and exercise to do the best I can. Hope it goes well for you!

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I totally believe the side effects we are experiencing is from Evenity.
Glad you are feeling better.
I did not know that the bone building was the first 6 months.

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lauratys | @lauratys | Oct 3 2:46pm
In reply to @hammondp2 "My friend is a dental hygienist. She warned me to stay away from bio phosphates. It..." + (show)
Profile picture for hammondp2 @hammondp2

My friend is a dental hygienist. She warned me to stay away from bio phosphates. It causes jaw rot.

Get Outlook for Android< https://aka.ms/AAb9ysg&gt;

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@hammondp2 I do know it can cause jaw necrosis, however, being at high risk for compression fractures prior to Evenity I decided to go on biphosphonate for 3-5 years post Evenity to lock in gains. If you take nothing you can get the "rebound" effect and be worse off than prior to Evenity. So much information to consider! Best to you!!

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njhornung | @normahorn | Oct 3 5:31pm
In reply to @lauratys "@hammondp2 I do know it can cause jaw necrosis, however, being at high risk for compression..." + (show)
Profile picture for lauratys @lauratys

@hammondp2 I do know it can cause jaw necrosis, however, being at high risk for compression fractures prior to Evenity I decided to go on biphosphonate for 3-5 years post Evenity to lock in gains. If you take nothing you can get the "rebound" effect and be worse off than prior to Evenity. So much information to consider! Best to you!!

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@lauratys
I think you are confusing Evenity with Prolia. It is Prolia with the rebound effect.

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gravity3 | @gravity3 | Oct 4 12:21am
In reply to @hammondp2 "I totally agree. I haven't been able to walk with the severe pain. My endocrinologist has..." + (show)
Profile picture for hammondp2 @hammondp2

I totally agree. I haven't been able to walk with the severe pain. My endocrinologist has not helped me either. My heart doctor is more helpful.
I had breast cancer in 2023 so I can only have the injections on my right side of my body.
My thigh was swelling up after each injection and I really believe it has caused me to have severe tendonitis.
I just had my 8th injection and I had both injections in my right arm. The severe pain subsided a few weeks after.
I called Evenity and they were no help.

Get Outlook for Android< https://aka.ms/AAb9ysg&gt;

Jump to this post

@hammondp2

I am surprised that both shots were given in one arm. Perhaps it would be helpful to mention that to your doc.

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lauratys | @lauratys | Oct 4 10:32am
In reply to @normahorn "@lauratys I think you are confusing Evenity with Prolia. It is Prolia with the rebound effect." + (show)
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@lauratys
I think you are confusing Evenity with Prolia. It is Prolia with the rebound effect.

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@normahorn I believe Evenity as well per my physician and Keith McCormick in Great Bones.

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njhornung | @normahorn | Oct 4 10:51am
In reply to @lauratys "@normahorn I believe Evenity as well per my physician and Keith McCormick in Great Bones." + (show)
Profile picture for lauratys @lauratys

@normahorn I believe Evenity as well per my physician and Keith McCormick in Great Bones.

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@lauratys
Scientific documenation backing that up?

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lauratys | @lauratys | Oct 4 11:51am

According g to my physician yes and if you have read Great Bones, McCormick well documents his information so to the best of my knowledge it is documented. I don’t have a specific study for you but was told I had to lock in gains with Reclast or bisphosphonate.

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lauratys | @lauratys | Oct 4 11:53am
In reply to @normahorn "@lauratys Scientific documenation backing that up?" + (show)
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@lauratys
Scientific documenation backing that up?

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@ Follow-Up Medication After Evenity
Importance of Follow-Up Treatment
After completing a 12-month course of Evenity (romosozumab), it is crucial to follow up with another medication. Evenity is designed to rapidly build bone density, but its effects diminish after the treatment ends. Without subsequent therapy, the benefits gained may be lost, increasing the risk of fractures.
Recommended Follow-Up Options
The most common follow-up treatments include:
MEDICATION TYPE PURPOSE
Prolia (denosumab) Antiresorptive Helps maintain bone density and reduce fracture risk after Evenity.
Bisphosphonates (e.g., alendronate) Antiresorptive Used to prevent bone loss and

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