1. < Osteoporosis & Bone Health

Anyone taken Evenity (romosozumab) for Osteoporosis?

Posted by arlene7 @arlene7, May 27, 2020

Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.

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windyshores | @windyshores | May 14 9:37am
In reply to @leslie2121 "Hi: I will add my experience with Evenity. I had a compression fracture in December, 2021..." + (show)
@leslie2121

Hi:
I will add my experience with Evenity. I had a compression fracture in December, 2021 and started Evenity in 2022. It was great until month 5 and started with fatigue, brain fog and rash on my scalp and ears, cheeks. I also had joint pains.
I stopped after month 8, then did a Reclast infusion November 2022. I had some gains but still osteoporosis in lumbar spine.
I’m going to Osteostrong now and not taking any medicine.
Hoping that helps - no other fractures since.

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@leslie2121 so you only had one infusion of Reclast?

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1 reply
susanfalcon52 | @susanfalcon52 | May 15 6:42am
In reply to @mmcbritef "I have had two doses of eventity so far. I do experience the sometimes overwhelming fatigue..." + (show)
@mmcbritef

I have had two doses of eventity so far. I do experience the sometimes overwhelming fatigue and also increased joint pain. I have aso noticed that I feel very anxious as well as brain fog and some memory loss which is not my usual mental state. Makes me think evenity may be the cause but the literature gives little info on this possibilty. Have any of you had such reactions with the evenity treatment?

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I have my 12th injections of Evenity tomorrow. After the first one, I had some fatigue. After that, no obvious side effects. I already had joint aches and pains, so I can’t blame that on Evenity.
Monday, I am having a dexa, so anxious to see if there are gains.
In June, I go on Reclast.
I don’t want to sound casual about any of this. All very anxiety provoking.
In the year that I have been on this journey, I have worked hard to gather information.
I have learned the most from (in this order):
1. This site and it’s posters
2. Dr. McCormick and all the other docs with YouTube videos 🙂
3. My endocrinologist and my rheumatologist
My level of trust also goes in that order.

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2 replies
gravity3 | @gravity3 | May 15 7:22am
In reply to @susanfalcon52 "I have my 12th injections of Evenity tomorrow. After the first one, I had some fatigue...." + (show)
@susanfalcon52

I have my 12th injections of Evenity tomorrow. After the first one, I had some fatigue. After that, no obvious side effects. I already had joint aches and pains, so I can’t blame that on Evenity.
Monday, I am having a dexa, so anxious to see if there are gains.
In June, I go on Reclast.
I don’t want to sound casual about any of this. All very anxiety provoking.
In the year that I have been on this journey, I have worked hard to gather information.
I have learned the most from (in this order):
1. This site and it’s posters
2. Dr. McCormick and all the other docs with YouTube videos 🙂
3. My endocrinologist and my rheumatologist
My level of trust also goes in that order.

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Can you tell me why your Endo prescribed reclast instead? My endocrinologist wants me on prolia after evenity. Says that is because I was on alendronate for 5 years prior to Evenity. This journey sucks!!!

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2 replies
kallettla | @kallettla | May 15 7:25am

I have have had 3 sets of Evenity injections. My only reaction is soreness for a few days at the injection site.

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windyshores | @windyshores | May 15 7:46am
In reply to @susanfalcon52 "I have my 12th injections of Evenity tomorrow. After the first one, I had some fatigue...." + (show)
@susanfalcon52

I have my 12th injections of Evenity tomorrow. After the first one, I had some fatigue. After that, no obvious side effects. I already had joint aches and pains, so I can’t blame that on Evenity.
Monday, I am having a dexa, so anxious to see if there are gains.
In June, I go on Reclast.
I don’t want to sound casual about any of this. All very anxiety provoking.
In the year that I have been on this journey, I have worked hard to gather information.
I have learned the most from (in this order):
1. This site and it’s posters
2. Dr. McCormick and all the other docs with YouTube videos 🙂
3. My endocrinologist and my rheumatologist
My level of trust also goes in that order.

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@susanfalcon52 yay! Congrats on finishing!

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windyshores | @windyshores | May 15 7:54am
In reply to @gravity3 "Can you tell me why your Endo prescribed reclast instead? My endocrinologist wants me on prolia..." + (show)
@gravity3

Can you tell me why your Endo prescribed reclast instead? My endocrinologist wants me on prolia after evenity. Says that is because I was on alendronate for 5 years prior to Evenity. This journey sucks!!!

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@gravity3 I believe I have been told Reclast is taken 3-5 years. Prolia can be taken 10 years or longer? (I would check "Great Bones" if I could find it!). They are both anti-resorptives as you know so I would wonder if the anti-resorptive effects are additive, meaning how different is it to do Prolia after alendronate (previous to Evenity) vs doing more alendronate in terms of things like dental issues or atypical femur fracture. And of course you will need Reclast when you stop Prolia. If any of us are in our 80's, Prolia can be taken for the rest of our lives so that solves the rebound problem! Otherwise, McCormick recommends 2-3 Prolia only then Reclast.

Have you discussed this with your doctor? They can no doubt answer your question as to why Prolia and give you a long term view of what is ahead.

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gurine | @gurine | May 15 8:13am
In reply to @gravity3 "I have not. I'm into shots 8." + (show)
@gravity3

I have not. I'm into shots 8.

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I have not and I've had 10.

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krwesolek | @krwesolek | May 15 8:15am

I’ve been on Evenity for a year and, according to my doctor, my bone density has increased really well. I’ll be taking Prolia now. The only side effects were injection site irritation (which decreased each time) and some jaw pain at the beginning.

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1 reply
gravity3 | @gravity3 | May 15 8:28am
In reply to @krwesolek "I’ve been on Evenity for a year and, according to my doctor, my bone density has..." + (show)
@krwesolek

I’ve been on Evenity for a year and, according to my doctor, my bone density has increased really well. I’ll be taking Prolia now. The only side effects were injection site irritation (which decreased each time) and some jaw pain at the beginning.

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May I ask your age and how long after evenity you will start prolia.

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1 reply
2121 | @leslie2121 | May 15 9:12am
In reply to @windyshores "@leslie2121 so you only had one infusion of Reclast?" + (show)
@windyshores

@leslie2121 so you only had one infusion of Reclast?

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Just the 1. It’s been 18 months now. I see my endocrinologist next spring to see where I am but don’t think I’ll take anything else. Tymlos has been suggested but I haven’t seen much lasting improvement to justify the crappy side effects.

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