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.

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

dgm123s | @dgm123s | Mar 23, 2022
In reply to @gina4bella "Do you have a Rheumatology/Endocrinology practice in your area? My rheumatologist specializes in both disciplines and..." + (show)
@gina4bella

Do you have a Rheumatology/Endocrinology practice in your area? My rheumatologist specializes in both disciplines and is treating my osteoporosis. If not, I think both rheumatologists and endocrinologists are equally versed in osteoporosis. Here is a good article that could help you decide. Good luck! https://www.bones.nih.gov/health-info/bone/osteoporosis/find-doctor

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Thank you!

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1 reply
gina4bella | @gina4bella | Mar 23, 2022
In reply to @dgm123s "Thank you!" + (show)
@dgm123s

Thank you!

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Your welcome! I can relate. I have other health issues and it's tough sometimes knowing which specialist is needed. 😊

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windyshores | @windyshores | Mar 24, 2022
In reply to @gina4bella "I posted back in September 2021 after getting my #5 round of injections and that I..." + (show)
@gina4bella

I posted back in September 2021 after getting my #5 round of injections and that I had only headaches, fatigue and rib cage pain at that point. Those symptoms were not palpable enough for me to stop my treatment with Evenity. Fast forward to last month and what was supposed to be my 10th round of injections, that with my doctor's approval, I postponed. After month 5, my symptoms of side affects became so much worse: headaches, fatigue, rib cage pain and adding in: anxiety, mood swings, shortness of breath, heavy chest and dizziness. My skipped injections (#10) are set for March 30th. Although my symptoms are not resolved, they are not quite as severe now. To be safe, I got my PCP to order a chest x-ray for me. I'll check back in and give an update. Is anyone else having similar or even their own set of side affects as well? I'm hoping to be able to continue with the last 3 injections, as my osteoporosis is severe.

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@gina4bella can you switch to Tymlos? Good luck if you continue with Evenity. I am sure that the months you have already done have been helpful. Are you getting a DEXA only after the full year?

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1 reply
mikko | @mikko | Mar 24, 2022
In reply to @gina4bella "Do you have a Rheumatology/Endocrinology practice in your area? My rheumatologist specializes in both disciplines and..." + (show)
@gina4bella

Do you have a Rheumatology/Endocrinology practice in your area? My rheumatologist specializes in both disciplines and is treating my osteoporosis. If not, I think both rheumatologists and endocrinologists are equally versed in osteoporosis. Here is a good article that could help you decide. Good luck! https://www.bones.nih.gov/health-info/bone/osteoporosis/find-doctor

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Thank you so much for the article about choosing a doctor. I have severe osteoporosis and was referred to an endocrinologist who recommended Evenity. I’ve had three set of injections and am experiencing bruising and lumps at injection sites, joint pain/aches, fatigue, headaches, dizziness and occasional shortness of breath. Unfortunately the response from my endocrinologist and his staff when I’ve communicated these issues is that they’ve never heard this before, which totally invalidates what I’m going through. While I wish you weren’t experiencing some of these same issues, you have made me feel like I’m not alone nor am I imagining what I’m feeling. After reading the article you referenced, I’m going to explore meeting with a rheumatologist. I believe this may be a better direction for me. Will update as I move forward.

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maryanneelizabeth | @maryanneelizabeth | Mar 24, 2022

New to this conversation about Evenity and Prolia. My T scores have me at 15% for a fracture. Scary to hear but was told Evenity can increase my bone mass 18% in a year and then Prolia for as long as I live. I’m soon to be 75 and have a family history of osteoporosis. Tried all the drugs leading up to these shots and couldn’t handle any of them. To do nothing now is not an option. I am very scared but also hopeful that these shots will keep me upright and out of a wheelchair in my 80’s. My first shot appointment is next week. I would like to document my experience here in the hopes it will help others, like myself, to decide what’s best for them. I’m healthy with no heart issues and never had a fracture. I take no meds and am grateful for my good health…other than my bad bones. I’m nervous, scared, and anxious to get this bone building started. Maybe it can help my golf game. Stay tuned…

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Chris Trout, Volunteer Mentor | @artscaping | Mar 24, 2022
In reply to @maryanneelizabeth "New to this conversation about Evenity and Prolia. My T scores have me at 15% for..." + (show)
@maryanneelizabeth

New to this conversation about Evenity and Prolia. My T scores have me at 15% for a fracture. Scary to hear but was told Evenity can increase my bone mass 18% in a year and then Prolia for as long as I live. I’m soon to be 75 and have a family history of osteoporosis. Tried all the drugs leading up to these shots and couldn’t handle any of them. To do nothing now is not an option. I am very scared but also hopeful that these shots will keep me upright and out of a wheelchair in my 80’s. My first shot appointment is next week. I would like to document my experience here in the hopes it will help others, like myself, to decide what’s best for them. I’m healthy with no heart issues and never had a fracture. I take no meds and am grateful for my good health…other than my bad bones. I’m nervous, scared, and anxious to get this bone building started. Maybe it can help my golf game. Stay tuned…

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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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2 replies
haroula | @haroula | Mar 25, 2022
In reply to @maryanneelizabeth "New to this conversation about Evenity and Prolia. My T scores have me at 15% for..." + (show)
@maryanneelizabeth

New to this conversation about Evenity and Prolia. My T scores have me at 15% for a fracture. Scary to hear but was told Evenity can increase my bone mass 18% in a year and then Prolia for as long as I live. I’m soon to be 75 and have a family history of osteoporosis. Tried all the drugs leading up to these shots and couldn’t handle any of them. To do nothing now is not an option. I am very scared but also hopeful that these shots will keep me upright and out of a wheelchair in my 80’s. My first shot appointment is next week. I would like to document my experience here in the hopes it will help others, like myself, to decide what’s best for them. I’m healthy with no heart issues and never had a fracture. I take no meds and am grateful for my good health…other than my bad bones. I’m nervous, scared, and anxious to get this bone building started. Maybe it can help my golf game. Stay tuned…

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I just had Evenity injection #3. So far mild side effects such as headache, fatigue and sore arms. I’m 71 and fractured my spine last year in a fall on rocks. I too was nervous, and still am, about Evenity side effects but believe it’s worth it if I can build stronger bones. I joke that at the end of the year I will either be 6 feet tall or dead 🤓. I’m only 5’3” now, having lost over 2 inches.

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2 replies
maryanneelizabeth | @maryanneelizabeth | Mar 25, 2022
In reply to @haroula "I just had Evenity injection #3. So far mild side effects such as headache, fatigue and..." + (show)
@haroula

I just had Evenity injection #3. So far mild side effects such as headache, fatigue and sore arms. I’m 71 and fractured my spine last year in a fall on rocks. I too was nervous, and still am, about Evenity side effects but believe it’s worth it if I can build stronger bones. I joke that at the end of the year I will either be 6 feet tall or dead 🤓. I’m only 5’3” now, having lost over 2 inches.

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Having a sense of humor is equally important as pharmaceuticals drugs. You have a healthy one. 😂. Thanks for sharing your side effects. I don’t get headaches but sounds like I need to stock up on Tylenol. Fingers crossed that at the end of my year I can recommend this medication and support those who struggle with the decision making.

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1 reply
haroula | @haroula | Mar 25, 2022
In reply to @maryanneelizabeth "Having a sense of humor is equally important as pharmaceuticals drugs. You have a healthy one...." + (show)
@maryanneelizabeth

Having a sense of humor is equally important as pharmaceuticals drugs. You have a healthy one. 😂. Thanks for sharing your side effects. I don’t get headaches but sounds like I need to stock up on Tylenol. Fingers crossed that at the end of my year I can recommend this medication and support those who struggle with the decision making.

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I look forward to keeping up with your experience. Best wishes.

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lillea | @lillea | Mar 25, 2022
In reply to @maryanneelizabeth "New to this conversation about Evenity and Prolia. My T scores have me at 15% for..." + (show)
@maryanneelizabeth

New to this conversation about Evenity and Prolia. My T scores have me at 15% for a fracture. Scary to hear but was told Evenity can increase my bone mass 18% in a year and then Prolia for as long as I live. I’m soon to be 75 and have a family history of osteoporosis. Tried all the drugs leading up to these shots and couldn’t handle any of them. To do nothing now is not an option. I am very scared but also hopeful that these shots will keep me upright and out of a wheelchair in my 80’s. My first shot appointment is next week. I would like to document my experience here in the hopes it will help others, like myself, to decide what’s best for them. I’m healthy with no heart issues and never had a fracture. I take no meds and am grateful for my good health…other than my bad bones. I’m nervous, scared, and anxious to get this bone building started. Maybe it can help my golf game. Stay tuned…

Jump to this post

Thank you for sharing.... sounds like you will have some followers, I will be one as I expect to start Evenity within the next two months. Wishing you the best!

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