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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abk | @abk | Mar 29, 2022
In reply to @saz "I am 64. I have a -4,7 Dexa and a long story of fractures. I had..." + (show)
@saz

I am 64. I have a -4,7 Dexa and a long story of fractures.
I had 2 months of Evenity. So far no side effects maybe some tiredness.
My concern is about metabolism: Evenity is an antibody of sclerostine. As sclerostin regulates adipocytes and energy homeostasis, has Evenity an effect on metabolism?
I have been told not to increase my weight in order to preserve my skeleton. However all my life I struggled against excess weight despite being sporty and despite a healthy diet. Today because of fractures I have reduced my physical activity and I can’t stop gaining weight.
Does anyone has experienced same issues? Could Evenity make a change?

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I have had four months of Evenity with no weight gain.

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saz | @saz | Mar 30, 2022

Thank you for replying. And this is good news for everyone who has osteoporosis as it is crucial not to overload our skeleton.
Unfortunately I don’t have knowledge in medicine but I found many researches linking sclerostine and adipose. I copy an extract of one of them:

https://pubmed.ncbi.nlm.nih.gov/34606641/

“The Wnt signaling antagonist, sclerostin, is a potent suppressor of bone acquisition that also mediates endocrine communication between bone and adipose. As a result, Sost-/- mice exhibit dramatic increases in bone formation but marked decreases in visceral and subcutaneous adipose that are secondary to alterations in lipid synthesis and utilization”
These researches are very recent. I guess further exploration on humans are needed. It will be nice if we could gather more information within this chat.
I wish you all the best!

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haroula | @haroula | Mar 30, 2022
In reply to @saz "Thank you for replying. Could I ask you if you ever had weight issues before?" + (show)
@saz

Thank you for replying. Could I ask you if you ever had weight issues before?

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Yes, on and off. Now I am about 6-7 pounds more than previous gains. While I have lost 2” from 5’5” to 5’3”, my weight used to fluctuate between 134-136, now it is 141-143. My spine fracture last year may be to blame in part since I have been less active. Food intake is same as before.

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2 replies
saz | @saz | Mar 30, 2022
In reply to @haroula "Yes, on and off. Now I am about 6-7 pounds more than previous gains. While I..." + (show)
@haroula

Yes, on and off. Now I am about 6-7 pounds more than previous gains. While I have lost 2” from 5’5” to 5’3”, my weight used to fluctuate between 134-136, now it is 141-143. My spine fracture last year may be to blame in part since I have been less active. Food intake is same as before.

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Thank you for this accurate answer. Your pattern matches mine. I will call Amgen/Evenity to ask for information. I will let you know.

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1 reply
haroula | @haroula | Mar 30, 2022
In reply to @saz "Thank you for this accurate answer. Your pattern matches mine. I will call Amgen/Evenity to ask..." + (show)
@saz

Thank you for this accurate answer. Your pattern matches mine. I will call Amgen/Evenity to ask for information. I will let you know.

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Thanks!

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maryanneelizabeth | @maryanneelizabeth | Mar 30, 2022
In reply to @artscaping "Greetings @maryanneelizabeth, and welcome to Connect. You sound like a most healthy 75-year-old and I understand..." + (show)
@artscaping

Greetings @maryanneelizabeth, and welcome to Connect. You sound like a most healthy 75-year-old and I understand your concerns about Osteoporosis. I just turned 80 this month and am caught up in the confusion of what is next. I was on injections from Tymlos for two years and then transitioned to Prolia. Evenity certainly is the newest medication and has the aility to build bone and prevent reabsorption. I am very allergic to all of the bisphosphonates which doesn't leave many choices.

I am glad you want to document your experience with Connect. So many will benefit from finding your story. I understand your fear. And I must say I miss playing golf. Shoulder surgery sort of eliminated that option. Just like you, I am struggling to stay ahead of the aging game and remain upright and waking.

So great to meet you. Please let me know how next weeks appointment goes.

May you have a life of comfort, ease and happiness.
Chris

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Well, I was supposed to have my first Evenity injection tomorrow. I received a reminder of my appointment from the clinic but they had me scheduled in the wrong location hours away. I’m always looking for signs and take this as a sign to do more research, ask more questions, and commit to my decision one way or the other. I must change my mind 100 times a day. Still not sure what right for me but now I have more time to think about it. I’ve got until the end of April now. Anybody else find this decision so difficult? I’m thinking more weight bearing and balance exercises, a more calcium rich diet and no drugs. But then there’s a worry about fractures. Ugh. Life is hard.

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1 reply
abk | @abk | Mar 30, 2022
In reply to @windyshores "@giannam why Reclast first and then Evenity? Doesn't it make more sense to do Evenity first..." + (show)
@windyshores

@giannam why Reclast first and then Evenity? Doesn't it make more sense to do Evenity first and then Reclast? I have read that doing a biphosphonate after a bone growing drug rather than before, is preferable. Bone quality is better with the bone-growing drugs and is a better foundation for maintaining with anti-resporptives. I am only another osteoporosis patient and not a doc but have read a study on this and it makes sense intuitively. Or maybe they want to see if Reclast does the job and then you wouldn't need the Evenity? Or insurance is requiring this order of things?

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This is exactly what my doctor says: Evenity first. Evenity is an expensive drug, and was at first denied by my insurance. Insurance wanted me to do a biphosphonate first, then Evenity. My doctor appealed their decision. She referenced several scientific studies in her letter, and won the appeal. Insurance companies are not as familiar with Evenity since it is relatively new, and they are not always aware of the newer scientific data.

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1 reply
windyshores | @windyshores | Mar 31, 2022
In reply to @abk "This is exactly what my doctor says: Evenity first. Evenity is an expensive drug, and was..." + (show)
@abk

This is exactly what my doctor says: Evenity first. Evenity is an expensive drug, and was at first denied by my insurance. Insurance wanted me to do a biphosphonate first, then Evenity. My doctor appealed their decision. She referenced several scientific studies in her letter, and won the appeal. Insurance companies are not as familiar with Evenity since it is relatively new, and they are not always aware of the newer scientific data.

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I am impressed by your doctor! Insurance policies prevent people from doing bone-growing drugs first, and they are more effective without previous bisphosphonates or Prolia, apparently. If only all doctors were as proactive as yours, perhaps insurance policies would change.

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1 reply
grannyc123tssb | @grannyc123tssb | Mar 31, 2022
In reply to @maryanneelizabeth "Well, I was supposed to have my first Evenity injection tomorrow. I received a reminder of..." + (show)
@maryanneelizabeth

Well, I was supposed to have my first Evenity injection tomorrow. I received a reminder of my appointment from the clinic but they had me scheduled in the wrong location hours away. I’m always looking for signs and take this as a sign to do more research, ask more questions, and commit to my decision one way or the other. I must change my mind 100 times a day. Still not sure what right for me but now I have more time to think about it. I’ve got until the end of April now. Anybody else find this decision so difficult? I’m thinking more weight bearing and balance exercises, a more calcium rich diet and no drugs. But then there’s a worry about fractures. Ugh. Life is hard.

Jump to this post

I felt the same way a few years ago when my doctor wanted me to start on Tymlos. My doctor gave me a sample pen that lasted for 1 month, while the prescription was submitted to my insurance company. My insurance company denied Tymlos, and I took that as a sign that I shouldn't take it. Looking back I was too stressed and unsure about taking Tymlos, so I think the sign was correct for me at that time. Fast forward to a few years later, I retired and decided to give Tymlos I try again because I knew I needed to do something for my bones, and being retired, had less daily work stress and more time to focus on myself and my health - Lo and behold, the same insurance company approved Tymlos. Again, I took that as a sign, and now after taking Tymlos for 1 and 1/2 years, my dexa scan numbers improved between 5 to 15%, and I will be starting on Prolia in a few weeks. Looking back, being unsure and stressed as I was, it was good for me not to take Tymlos at that time. Stress isn't good for us either. But now I'm calmer about the process of taking new drugs. (I do wonder if my bones would have been in even better shape if I started the Tymlos sooner than later, but water under the bridge now.)
I still do my thorough research, and had two opinions from endocrinologists regarding the Prolia.
So, all this to say, you are not alone. These decisions are challenging. Praying for peace of spirit for you and all of us. 😊🙏♥️

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1 reply
maryanneelizabeth | @maryanneelizabeth | Mar 31, 2022
In reply to @grannyc123tssb "I felt the same way a few years ago when my doctor wanted me to start..." + (show)
@grannyc123tssb

I felt the same way a few years ago when my doctor wanted me to start on Tymlos. My doctor gave me a sample pen that lasted for 1 month, while the prescription was submitted to my insurance company. My insurance company denied Tymlos, and I took that as a sign that I shouldn't take it. Looking back I was too stressed and unsure about taking Tymlos, so I think the sign was correct for me at that time. Fast forward to a few years later, I retired and decided to give Tymlos I try again because I knew I needed to do something for my bones, and being retired, had less daily work stress and more time to focus on myself and my health - Lo and behold, the same insurance company approved Tymlos. Again, I took that as a sign, and now after taking Tymlos for 1 and 1/2 years, my dexa scan numbers improved between 5 to 15%, and I will be starting on Prolia in a few weeks. Looking back, being unsure and stressed as I was, it was good for me not to take Tymlos at that time. Stress isn't good for us either. But now I'm calmer about the process of taking new drugs. (I do wonder if my bones would have been in even better shape if I started the Tymlos sooner than later, but water under the bridge now.)
I still do my thorough research, and had two opinions from endocrinologists regarding the Prolia.
So, all this to say, you are not alone. These decisions are challenging. Praying for peace of spirit for you and all of us. 😊🙏♥️

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You are an Angel. This is exactly what I needed to read right now. I’m glad you made your decision when the time was right. Timing is everything in all things. Thanks for your positive and uplifting words. I wish you continued good health, strong bones and a life full of love and happiness. It just takes a village sometimes. 🙂💕

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