1. < Osteoporosis & Bone Health

My Experience with Evenity

Posted by ella5321 @ella5321, Jan 16 11:42pm

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.

gravity3 | @gravity3 | Jan 20 12:54pm
In reply to @lauratys "I tried Fosomax for two months and all aching/joint pain came back. Switched to once a..." + (show)
@lauratys

I tried Fosomax for two months and all aching/joint pain came back. Switched to once a month Actonel and I’m fine. A little achy at times but totally manageable. Hope this helps! PS After struggling with Evenity I didn’t want Reclast yearly injection as I didn’t want to take a chance on same type adverse reaction.

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Thanks

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Merry, Alumni Mentor | @merpreb | Jan 22 7:52am
In reply to @lauratys "Evenity is a 12 month course of injections, 2 each month. I experienced the muscle/joint aches..." + (show)
@lauratys

Evenity is a 12 month course of injections, 2 each month. I experienced the muscle/joint aches pretty severely by month 8 or so. I stopped at month 11 and am on Actonel and doing well. I have posted previously about adverse reactions on this site. Hope this helps! Evenity improved my bone density most significantly in my spine and that was the worst site. Went from -3.8 to -2.1. Took all three test spots out of osteoporosis range. It did feel like I had bad arthritis, which I don't but after 6 months it went away for the most part. I think a bit of aching I have now may be from Actonel but easily tolerated and not debilitating like last months of Evenity. I don't regret doing it but at the time when I was so uncomfortably I thought I had made a terrible mistake. Best to you!

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Laura- Thank you for this great explanation.

Merry

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gravity3 | @gravity3 | Jan 22 7:57am

How did you make a decision between prolia and reclast

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grammy1612 | @grammy1612 | 1 day ago

I came here to see reviews by other users of Evinity. I have completed my 4th month injections. With each month the joint and lower back pain has gotten worse, as well as arthritis. I will try to continue on since I do have Osteoporosis and Scoliosis and may need spine surgery in 2025. Thank you for your reviews.

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1 reply
robe1018 | @robe1018 | 1 day ago

Im going to get my 10th shot next week. I have been miserable everyday with joint pain, sharp pain in places that i have broken bones previously, stomach issues, and just achy muscles. Before i started i had lost 20lbs but in this 9 months i have put 10 back. At this time they also decreased my synthroid. Im trying to decide if it’s worth going on. I am going to ask my doctor to do the thyroid test with my other blood work. I have fibro, arthritis, sjogrens, and severe thyroid disease. I have also been pretty down this whole time, just because i think im just feeling crappy. I am 75 and pretty active. Just very frustrated. Any thoughts would be greatly appreciated.

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2 replies
tmarkow | @tmarkow | 1 day ago
In reply to @robe1018 "Im going to get my 10th shot next week. I have been miserable everyday with joint..." + (show)
@robe1018

Im going to get my 10th shot next week. I have been miserable everyday with joint pain, sharp pain in places that i have broken bones previously, stomach issues, and just achy muscles. Before i started i had lost 20lbs but in this 9 months i have put 10 back. At this time they also decreased my synthroid. Im trying to decide if it’s worth going on. I am going to ask my doctor to do the thyroid test with my other blood work. I have fibro, arthritis, sjogrens, and severe thyroid disease. I have also been pretty down this whole time, just because i think im just feeling crappy. I am 75 and pretty active. Just very frustrated. Any thoughts would be greatly appreciated.

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This happened to me w Prolia.
One has to wonder….if it causes such pain, is it doing something else that’s bad but we don’t see?

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robe1018 | @robe1018 | 1 day ago

I’m thinking the same. Every medicine for osteoporosis has many issues. I’m questioning all of them now. Thxs for your reply.

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ripley | @ripley | 1 day ago
In reply to @grammy1612 "I came here to see reviews by other users of Evinity. I have completed my 4th..." + (show)
@grammy1612

I came here to see reviews by other users of Evinity. I have completed my 4th month injections. With each month the joint and lower back pain has gotten worse, as well as arthritis. I will try to continue on since I do have Osteoporosis and Scoliosis and may need spine surgery in 2025. Thank you for your reviews.

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Is your joint and muscle pain 24/7? My Dr wants me to start it, but I already have fibromyalgia so am in pain every day already. I worry about my bones because my spine has a very bad DEXA score, but I'm afraid of adding to my pain. I can't take Forteo or Tymlos due to parathyroid issues.

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ripley | @ripley | 1 day ago
In reply to @robe1018 "Im going to get my 10th shot next week. I have been miserable everyday with joint..." + (show)
@robe1018

Im going to get my 10th shot next week. I have been miserable everyday with joint pain, sharp pain in places that i have broken bones previously, stomach issues, and just achy muscles. Before i started i had lost 20lbs but in this 9 months i have put 10 back. At this time they also decreased my synthroid. Im trying to decide if it’s worth going on. I am going to ask my doctor to do the thyroid test with my other blood work. I have fibro, arthritis, sjogrens, and severe thyroid disease. I have also been pretty down this whole time, just because i think im just feeling crappy. I am 75 and pretty active. Just very frustrated. Any thoughts would be greatly appreciated.

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I'm 74, have no thyroid and also have fibro with daily pain, so am worried to start Evenity, as my Dr suggests. I can't take Tymlos or Forteo due to parathyroid issues. Does Evenity somehow affect the thyroid, as you mentioned they decreased your synthroid?

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robe1018 | @robe1018 | 1 day ago

I'm not sure if the envenity escalated my thyroid decrease or not, but I have dealt with thyroid issues for over 47 years and I can tell when my body isn't right. I can't even do my pilates without pain and I was breezing through it just fine - of course the doctors will tell me it's all in my mind but when I know, I know. If I had to do it over again I probably wouldn't have started the shots. I was feeling really great before I started. I did reclast, fosamax and I still shattered my wrist, which caused them some concern. I do feel like an old lady right now. I go next week and hope to get off of it, and get back to feeling good. I do think it has escalated my joint pain and muscles. let me know if you have any questions and I will for sure drop a note into this site to let you know of my doctor discussion. It's also very time consuming going in every month to get the two shots. My thoughts.

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