1. < Osteoporosis & Bone Health

My Experience on Evenity for Treating Osteoporosis

Posted by arlene7 @arlene7, Jul 7, 2020

Thought I would share for those considering or on Evenity for osteoporosis:
Afer much research and discussions with my GP and Cardiologist, I have decided to start my treatment with Evenity injections. As with all drugs, there are many side effects. My biggest concerns were stroke and heart attack. However, considering that I do no have any history for either, for me personally, the benefits outweigh the risks. As my GP said to me, "if everyone only thought about the side effects of the drugs, no one would be taking them".

I had my first injections (subcutaneously in the back of each arm) on June 30th. The nurse that administered the injections discussed the drug in depth, along with all the possibilities that may occur. She also mentioned that for all the patients that she has seen, none has had any side effects.

The injections are once a month for only one year, so I'm hoping that this works well for me and I can improve my bone density, especially in my spine, where I need it the most.

My endocronologist has also prescribed Hydrochlorthiazide for my idiopathic hypocalcemia. I have an appointment with an allergist this month to confirm whether I still have an allergy to sulfa drugs, since this drug contains sulfa. Apart from this I take D3 orally and try to obtain additional calcium through foods not supplements. Trying to walk 3-4 times a week and will begin with a few weight bearing exercises.

My journey began September, 2019 when I was diagnosed with severe osteoporosis. After waiting to see three doctors, receiving three denials from insurance company for Evenity, which took several months, I am hopefully on my way for a favorful outcome.

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

cat714 | @cat714 | May 16, 2023
In reply to @hudsonlady "I started Evenity in November with no bad side effects EXCEPT dental work! By the third..." + (show)
@hudsonlady

I started Evenity in November with no bad side effects EXCEPT dental work! By the third injection, a tooth needed extraction and my doctors stopped the third but declined to comment on what to do next. However, both oral surgeons recommended stopping for a month or two, having the dental procedure, and then starting in a month or two. Due to how events unfolded with appointments, I waited 2 months for extraction and resumed in one month after go-ahead from the oral surgeon. At this point, I have no idea what affect this might have on the treatment and can't find any info on this but will report back here next bone density or Xray. If anybody knows...

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I did the same as you. I will start back for my 2nd shot in June. No problem with it. Good luck to us.

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merle725 | @merle725 | May 16, 2023
In reply to @colleenyoung "Thanks @arlene7 for giving this overview of your experience. I also want to link to the..." + (show)
@colleenyoung

Thanks @arlene7 for giving this overview of your experience. I also want to link to the "companion" discussion here:
- Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

I'd appreciate your returning to this discussion to provide an update as you continue to receive injections of the next year. Did you ultimately get approval from your insurance to cover this drug?

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My insurance approved Evenity. UHC part F.
I was on it for a year and had no side effects. Unfortunately my DXA scan showed no improvement. Then I had an injection of Reclast and am still having severe pain in both legs months later. I started with Tymlos. I still have severe osteoporosis and don’t want to try anything else. My body has not responded. Very frustrating to say the least.

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bruceandruth1970 | @bruceandruth1970 | May 16, 2023
In reply to @hudsonlady "I started Evenity in November with no bad side effects EXCEPT dental work! By the third..." + (show)
@hudsonlady

I started Evenity in November with no bad side effects EXCEPT dental work! By the third injection, a tooth needed extraction and my doctors stopped the third but declined to comment on what to do next. However, both oral surgeons recommended stopping for a month or two, having the dental procedure, and then starting in a month or two. Due to how events unfolded with appointments, I waited 2 months for extraction and resumed in one month after go-ahead from the oral surgeon. At this point, I have no idea what affect this might have on the treatment and can't find any info on this but will report back here next bone density or Xray. If anybody knows...

Jump to this post

I had dental surgery too after having an injection of Evenity. I also wonder what the results will be. Best of luck to you.

REPLY
hudsonlady | @hudsonlady | May 16, 2023

So far so good. Will report any changes. Good luck to you.

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susanfalcon52 | @susanfalcon52 | May 16, 2023

I start Evenity next week - May 23. Will report back.

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mao22 | @mao22 | May 16, 2023

I just had my second round of injections 2 weeks ago in my arms. There was no pain at all the first time and some stinging in my left arm the second time. Arms were a bit achy for a day post injection but so far I have not had any of the reported side effects. I totally shied away from having the injections in my stomach.
I wonder if the probability of possible side effects occurrence increases the farther along one gets in the process.

REPLY
2 replies
hudsonlady | @hudsonlady | May 16, 2023
In reply to @mao22 "I just had my second round of injections 2 weeks ago in my arms. There was..." + (show)
@mao22

I just had my second round of injections 2 weeks ago in my arms. There was no pain at all the first time and some stinging in my left arm the second time. Arms were a bit achy for a day post injection but so far I have not had any of the reported side effects. I totally shied away from having the injections in my stomach.
I wonder if the probability of possible side effects occurrence increases the farther along one gets in the process.

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DK and am frustrated by lack of info. Does anyone know of a credible source?

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dreamjean1958 | @dreamjean1958 | May 17, 2023
In reply to @mao22 "I just had my second round of injections 2 weeks ago in my arms. There was..." + (show)
@mao22

I just had my second round of injections 2 weeks ago in my arms. There was no pain at all the first time and some stinging in my left arm the second time. Arms were a bit achy for a day post injection but so far I have not had any of the reported side effects. I totally shied away from having the injections in my stomach.
I wonder if the probability of possible side effects occurrence increases the farther along one gets in the process.

Jump to this post

I just had my fifth injection of Evinity . I usually had it in my stomach on each side . That was much better than in the back of my arms . It stung really bad on one side . My arms are quite sore . I’m going back to my stomach injections. Other than that. No side affects. I believe it’s working because I injured my foot again. No breaks. It is just sprained pretty bad . My dog and I got attacked by a pit Bull
.So I hit the ground to protect him . Bruised my arm, ankle and sprained my big toe 2 nd and 3 rd. Had to protect my fur baby . After 2 failed attempts for the neck . And going for the 3 rd . . My instinct was hit the ground cover your fur baby. Thank God the owner came out. Heard me screaming . I have had a fracture since Sept 23 22 . Non union . Since didn’t break it . I’m assuming Evinity is working . I shared my ordeal of dog attack ., because I know that my bones would have broke . My Dexa scan Was one of the worst my pidiatrist ever sae . They had me stay in all winter long . That’s how bad they were Reason was took Forteo in 2018 and 2019 . No one caught that I was suppose to be taken a reabsorbtion prescription after that . They failed me Big Time .

REPLY
1 reply
vasso | @vasso | May 27, 2023

As I finished my Evenity shots last month (April) without any serious side effect I would like to announce the results of my DXA . It seems to be quite lucky because I had a 18% improvement in my spine , as well a 3,9% in the total hip and a 0,7% in the femoral neck . I continue to be on osteoporosis but I had already my first injection of Prolia on 12th of May and I hope that I’ll keep the improvement I have gained with Evenity .
Good luck to everyone

REPLY
stephl | @stephl | May 28, 2023
In reply to @dreamjean1958 "I just had my fifth injection of Evinity . I usually had it in my stomach..." + (show)
@dreamjean1958

I just had my fifth injection of Evinity . I usually had it in my stomach on each side . That was much better than in the back of my arms . It stung really bad on one side . My arms are quite sore . I’m going back to my stomach injections. Other than that. No side affects. I believe it’s working because I injured my foot again. No breaks. It is just sprained pretty bad . My dog and I got attacked by a pit Bull
.So I hit the ground to protect him . Bruised my arm, ankle and sprained my big toe 2 nd and 3 rd. Had to protect my fur baby . After 2 failed attempts for the neck . And going for the 3 rd . . My instinct was hit the ground cover your fur baby. Thank God the owner came out. Heard me screaming . I have had a fracture since Sept 23 22 . Non union . Since didn’t break it . I’m assuming Evinity is working . I shared my ordeal of dog attack ., because I know that my bones would have broke . My Dexa scan Was one of the worst my pidiatrist ever sae . They had me stay in all winter long . That’s how bad they were Reason was took Forteo in 2018 and 2019 . No one caught that I was suppose to be taken a reabsorbtion prescription after that . They failed me Big Time .

Jump to this post

Wow! Glad you survived the dog experience!
I can only have the injections in the belly (that's where my doc does it). The first time was bad, but I had my second a week and a half ago, took an Aleve an hour before, pinched the hell out of my opposite arm during the injection, and put ice on the injection sites for two nights. NO PROBLEM! Good luck to you!

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