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.

I just completed a full year on Evenity. My scan showed enough improvement so that I am in the osteopenia range instead of osteoporosis. I have seen two rheumatologists, both of whom suggest following up with Prolia in order to hold on to the gains. I am reluctant to start Prolia and commit to being on it for the rest of my life. I am 60.

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@elisabethv

I just completed a full year on Evenity. My scan showed enough improvement so that I am in the osteopenia range instead of osteoporosis. I have seen two rheumatologists, both of whom suggest following up with Prolia in order to hold on to the gains. I am reluctant to start Prolia and commit to being on it for the rest of my life. I am 60.

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@elisbethv how were your side effects on Evenity? Excellent progress! I'm in the other boat—have been on Prolia for years (no side effects), now I have to change—Evenity was suggested and Reclast, which I had a bad reaction to 12 yrs ago when I took it. Just came from a 2nd opinion consult (another Endo, I love mine but... Completely different approach and drugs—Fosamax—said she's "old school". I'm 66 and if I could take Prolia for the rest of my life I'd do it in a heartbeat.

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@giannam

@elisbethv how were your side effects on Evenity? Excellent progress! I'm in the other boat—have been on Prolia for years (no side effects), now I have to change—Evenity was suggested and Reclast, which I had a bad reaction to 12 yrs ago when I took it. Just came from a 2nd opinion consult (another Endo, I love mine but... Completely different approach and drugs—Fosamax—said she's "old school". I'm 66 and if I could take Prolia for the rest of my life I'd do it in a heartbeat.

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I took Fosomax for 3 years. My bone density continued to decrease. I had no side effects from Evenity aside from soreness and redness at the injection site. Why do you need to stop Prolia? I am meticulous about my diet. Although I eat predominantly a plant based diet, I do get a good deal of calcium from foods. I take vitamin D but no calcium supplements. I exercise quite a bit daily, including spine strengthening exercises. Also, I am looking into OsteoStrong.

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@elisabethv

I took Fosomax for 3 years. My bone density continued to decrease. I had no side effects from Evenity aside from soreness and redness at the injection site. Why do you need to stop Prolia? I am meticulous about my diet. Although I eat predominantly a plant based diet, I do get a good deal of calcium from foods. I take vitamin D but no calcium supplements. I exercise quite a bit daily, including spine strengthening exercises. Also, I am looking into OsteoStrong.

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@elisabethv 6/5/21 I tripped over a bag of potting soil and went into a wood pallet we store logs on and concrete garage floor. Broke 6 (L) ribs, I think there was an oversight probably 7, as it showed up out of the blue on another x-ray taken in 11/21. It was taken because I felt more pain than usual, turns out 1 broke another. No fall, but that's a total of 8. My Endo wants me on something stronger for bone building. I eat well, take D3 and like you try and get calcium from foods but use 600 mg supplement instead of 1200. Going to a physiologist Monday who will get me started with PT. Ribs are brutally painful to break and 2 were acute. Everything involves moving your torso, so exercise went out the door last June. I'm 117 lbs, in good shape until this happened.

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@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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Hi @maryanneelizabeth I'm on that Evenity fence and have to med a med decision very soon after being on Prolia for so many years (no side effects for me on Prolia). Like you nervous, scared, anxious but I need to do this....I fractured this past summer and am still suffering. Ribs. I'm staying tuned all around. Best wishes and sending good thoughts your way.

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@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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Hi @artscaping I'm a little confused. Did you move to Prolia for a reason or it was 'just time'? As said above after such a good, long run with Prolia I hate to give it up. Evenity is in the mix in making a decision, one I'm truly agonizing over. This group has saved my sanity for the few weeks I've been a part of it—I'm SO grateful to everyone here! Were you ever on Evenity yourself or just the Tymlos and now Prolia? Many Thanks!

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@lillea

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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Hi @lillea, and I'll be right there with you both once I jump off of the diving board!

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@giannam

@elisabethv 6/5/21 I tripped over a bag of potting soil and went into a wood pallet we store logs on and concrete garage floor. Broke 6 (L) ribs, I think there was an oversight probably 7, as it showed up out of the blue on another x-ray taken in 11/21. It was taken because I felt more pain than usual, turns out 1 broke another. No fall, but that's a total of 8. My Endo wants me on something stronger for bone building. I eat well, take D3 and like you try and get calcium from foods but use 600 mg supplement instead of 1200. Going to a physiologist Monday who will get me started with PT. Ribs are brutally painful to break and 2 were acute. Everything involves moving your torso, so exercise went out the door last June. I'm 117 lbs, in good shape until this happened.

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That is quite an injury. I wish you safe healing and a smooth path ahead. It is so very difficult to navigate this disease. I find myself considering all the options all the time. Best of luck to you.

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@giannam

Hi @maryanneelizabeth I'm on that Evenity fence and have to med a med decision very soon after being on Prolia for so many years (no side effects for me on Prolia). Like you nervous, scared, anxious but I need to do this....I fractured this past summer and am still suffering. Ribs. I'm staying tuned all around. Best wishes and sending good thoughts your way.

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Hello Ginnam. Prolia before Evenity? That’s interesting. Glad to know you had no side effects from Prolia but sorry about your fracture. Sounds like we all are nervous about these med decisions. All we can do is weigh all the facts, listen to your doc and pray we can get through this without a debilitating future. I think you found a great huddle group on this site. Be strong. Stay strong. Reach out when you need to. We all care about each other here. Hope you find peace and calm. All the best to you.

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@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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@haroula I definitely agree about a sense of humor! Besides all of the ups, downs and sideways here it's a great outlet to deal with things and connect with others who are also wondering/struggling. Such a wealth of knowledge from people. I'm 66, fell in June into a pallet with winter logs and fractured 8 ribs...of course on my left side— my L hip is the worst (spine also, not as bad). I had my yearly with my PCP yesterday and asked them to remeasure my height twice. How could I go from 5 ft 3/4 in to
5 ft 4.5 in ??!! Totally impossible—that's a definite scale malfunction! My very best to you.

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