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.

Hope this helps. So many options and we are all different!

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Profile picture for lauratys @lauratys

@ 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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@lauratys

Gains may be lost without subsequent treatment for Forteo, Tymlos, and Evenity. That is not the same as rebound; rather it is nature taking over and reverting to the normal progressive loss. Huge difference.

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Profile picture for gravity3 @gravity3

@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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@gravity3 yes I’m also surprised that both shots were given in one arm. I had the option of a shot in each arm or both shots in my stomach and I went with a shot in each arm and I’m about to have shot number seven and have had no side effects that I know of.

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I have not read all of the comments, but one thing everyone might want to keep in mind is how to space the Evenity injections with the flu vaccine and the Covid vaccine if you’re getting those. My endocrinologist said to space them two weeks apart so I’m getting an injection and then 14 days later I will get the Covid vaccine and then 14 days later. I’ll get the next injection and 14 days after that I will get the flu vaccine. Also, it is a good idea to space out a mammogram at least two weeks after the injection so that lymph nodes do not show up swollen on the mammogram.

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I will also add that I have regular Medicare and it has paid so far in full and I haven’t paid a penny for the Evenity injections. It depends on what code is used when the injections are billed.

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Profile picture for szark55 @szark55

I was taking reclast infusions annually, with Jo side effects. Now have spine fractures and will be getting my 2nd Evenity injection this week. Slightly concerned only because of the debilitating headaches I got from the 1st one. Only lasted a few days. Wondering if I should expect this after each time?
I did have soreness at the injection sights, but no big deal.
I have not had to pay anything so far, with Medicare.

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@szark55 I also had the headache for the first 2 months of injections, now I'm on my fifth month of injections and don't get the headaches. I do however get achy joints such as ankles knees elbows and shoulders. I do feel stronger when I'm doing my balance exercises then I did before I started evinity injections so I am grateful I'm on this course. I hope your side effects have gotten easier

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Profile picture for gravity3 @gravity3

@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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@gravity3
My endocrinologist said it would be okay to get the 2 shots in the same arm. I called Evenity and they confirmed it. I am a breast cancer survivor and I had lymph nodes removed on my left side and I cannot get any shots on my left side.

After the 2 shots in my fright arm, I have been having strange pains in my stomach.

I spoke to my cousin and she said that I should not be on Evenity because I only have osteopenia.
She said to see a rheumatologist.

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Profile picture for gravity3 @gravity3

@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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@gravity3

I didn't have many choices since I cannot have any injections on the left side of my body because I had lymph nodes removed.
My pain has been so severe that I could not do another injection on my right leg.

My doctor and Evenity said it would be okay to give me both injections on my right arm, but it had to be at least 2" apart.

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Profile picture for hammondp2 @hammondp2

@gravity3

I didn't have many choices since I cannot have any injections on the left side of my body because I had lymph nodes removed.
My pain has been so severe that I could not do another injection on my right leg.

My doctor and Evenity said it would be okay to give me both injections on my right arm, but it had to be at least 2" apart.

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@hammondp2

Thanks for sharing that information.

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Thanks for your post.
I am 5 months in. I will have a DEXA after 7 infusions.
If results are good, I will have annual Reclast infusion for three years.

Should I consider Prolia instead?

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