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 dbamos1945 @dbamos1945

@kristie2: Thank you for your post on life after Evenity.
Will you share your experience (side effects, etc) on Prolia? And your bodies experiences now on Reclast?
I, like many with Osteoporosis, am exploring the bone gains of Evenity and what drug to choose after the 12months of Evenity!?!
Your input would be valued!
dbamos1945

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@dbamos1945 I had no side effects from Prolia or Reclast. I had Reclast in September it’s been 4 weeks and nothing so far.
Prolia after one year only showed a minimal gain. I went from -3.3 to -3.2 in my spine. My endocrinologist was wanting me to go on it for 2 years. With the small amount of gain we felt it wasn’t working for me. So moved on to Reclast.

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Profile picture for grammy9 @grammy9

@gravity3 Thank you so much!!! Did you do Prolia?

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@grammy9

I am prolia now. 2 shots and i am thinking about transitioning to a light dose of reclast to help with rebound. I have taken fosomax, forteo and evenity before prolia.

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Profile picture for gravity3 @gravity3

@grammy9

I am prolia now. 2 shots and i am thinking about transitioning to a light dose of reclast to help with rebound. I have taken fosomax, forteo and evenity before prolia.

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@gravity3 What is the rebound? Did you have symptoms with Prolia? I have done Fosamax and Evenity so far. Thank you!!!

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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 yes sorry jumping in here not familiar with this thread, but my bone specialist, and endocrinologist HOPKINS, is recommending I start 12 months on Evenity to build the most rapidly, and then go on Prolia absolute must once every six months! I have about 4 mile compression fractures and that thoracic spine with scoliosis. 76 yr severe risk now.

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Thank you for sharing your information. I just don't know if I want to commit to Prolia at 69 y.o. I will get DEXA early November and see if Actonel has worked after Evenity. My doctor has had success with others using Evenity and then Fosomax or Actonel. I have had no breaks and otherwise healthy and very active. (I only quit downhill skiing a couple years ago due to rotator cuff issues.)

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Did you have any special conditions that helped insurance pay for the cost of evenity? I am 67 years old, just diagnosed with Osteoporosis, no other issues. T score of -2.7 on lumbar spine, hips and femur still Osteopenia. My doctor told me insurance would not cover Evenity ( Medicare Advantage) and my cost would be os about 70000 dollars!

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Profile picture for pcretella @pcretella

Did you have any special conditions that helped insurance pay for the cost of evenity? I am 67 years old, just diagnosed with Osteoporosis, no other issues. T score of -2.7 on lumbar spine, hips and femur still Osteopenia. My doctor told me insurance would not cover Evenity ( Medicare Advantage) and my cost would be os about 70000 dollars!

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@pcretella: I have Original Medicare with Part A&B& drug plan through group & senior suppliment insurance. I never wait for referrals, get all rx my doc prescribes -no problem.
For me I would not change from Original Medicare - the premiums might be more expensive, but my best health care is of primary importance.

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Profile picture for lauratys @lauratys

@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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@lauratys

I cancelled my appointment for my 10th shots because of debilitating joint and bone pain. My last shots (9th) were approximately 5 weeks ago. I still do not have any relief, I am in constant pain, late night and morning are the worst. I do have arthritis but my orthopedic doctor told me it is not bad enough to cause the extreme pain I am experiencing. I had EMG/NCV tests yesterday and was told there is no damage to my nerves or muscles other than slight neuropathy in my feet. At night and in the morning I am using a walker. I can't drive because of leg pain. After the 9th shots I developed arm, shoulder, and lower back pain. I too was repeatedly told that the pain I was experiencing was not due to Evenity. One of the infusion nurses told me my bone pain was a good sign - "that means it's working" I hope my pain diminishes over time because my health, at this point, is in shambles.

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Profile picture for hammondp2 @hammondp2

@mave14
Evenity does not disclose all the true side effects. I called them 3 times regarding my pain. They just listen and don't get back to you.
There is a pill that helps for tendonitis but right now I am trying the pill for osteoarthritis.
The front of my knees are start to feel better.
I have finished my 8th month.

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@hammondp2 Would you mind sharing the name of the medication that helps with tendonitis? I hope you are continuing to improve. I refused the 10th shots because of debilitating pain. I'm hoping I'll improve over time. It's been about five weeks since my last shots and still no relief. Best of luck to you on your osteo journey.

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Profile picture for pcretella @pcretella

Did you have any special conditions that helped insurance pay for the cost of evenity? I am 67 years old, just diagnosed with Osteoporosis, no other issues. T score of -2.7 on lumbar spine, hips and femur still Osteopenia. My doctor told me insurance would not cover Evenity ( Medicare Advantage) and my cost would be os about 70000 dollars!

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@pcretella You might be eligible for financial assistance from Amgen (the manufacturer of Evenity). They have several options available based on what insurance you have and your finances. If you're not eligible for any of their programs, they can direct you to other resources. I would also speak with your pharmacist and also look into state assistance programs. If you used an agent for your insurance, call them. Try calling whoever administers your plan. Since Medicare Advantage open enrollment for 2026 is now available, see what plans will pay for Evenity.

There's a lot out there, so just do the research and don't give up! Best wishes to you moving forward.

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