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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@barbiea

I am having the same questions and concerns about Evenity treatment. I am scheduled to start my first injection on 1/5/23. But right now I've been fighting the flu (I think) for the past week, still sick, better but not 100%. I am even more leery about starting now, I want to be at 100% (if possible). I also have gum issues, I been going to Dentist every 6 months for my cleanings, they have to do a deep cleaning due to my gums. Years ago I had to build up bone in my jaw to have a post put in (that was right after Chemo treatments).So now I'm concerned about that. I also have carotid artery stenosis. I am going to contact my Rheumologist with these concerns. Weigh the pros and cons.. ugh

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If you have dental problems, can you consider Tymlos or Forteo instead of Evenity? They don't have the same risk with dental work, I believe.

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@windyshores

If you have dental problems, can you consider Tymlos or Forteo instead of Evenity? They don't have the same risk with dental work, I believe.

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@windyshores..thanks for your response. I have a message into my Dr about my dental concerns, I'm not sure if he is aware of it ( or remembers, as I've only seen him 3x's) .

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@arlene7, I've had a response from a few ladies who have tried it. I'm also waiting to get started on Evenity, but getting a bit nervous as the day approaches. I have a message into my Dr about some concerns.

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@nancyguy

I saw an endocrinologist who discussed Evenity with me. Possible side effects include stroke and heart attack. Originally, the FDA refused to approve this med. Finally, in April 2019, it was approved. I refused to take it although that doctor told me it was the only med I could take to strengthen bones (because I had radiation for cancer in the past). I am on Fosamax, which does not strengthen bones, but is supposed to prevent further thinning (which I doubt because of recent x-rays which showed a thinning of pelvic bone between June 2019 and Feb. 2020. So, you see, with severe osteoporosis, I am "between a rock and a hard place." Good luck to you with whatever you choose. God bless!
Nancy

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Hello! Also between a rock and a hard place! I have known for years that I have osteoporosis and I also have severe scoliosis. I have avoided all of the bone health medicines, until recently, after I sustained a compression fracture (and they found two older fractures I wasn't aware of). They are recommending Evenity but I also have high cholesterol and have only been on statins for about a month. My cardiologist says I can't have the Evenity injections until I've been on statins for at least two months. If I don't take statins, then Evenity is out for me and I'll have to try something else for bone health. I don't think I can stay on this statin as I have had some severe joint pain (one of the side effects). It's quite frustrating!

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@barle

I just finished my 3rd or 4th one time a year infusion of Reclast. I have had no SE of any kind. HAD A DEXA-Scan few months ago most OP sites were slightly improved. But, my right hip got significantly worse. No known reason. Now, they want me to start Evenity. The possible SE scare me to death!!!

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I am very afraid of the side effects of Evenity as well!

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I chose Tymlos because it can be followed with Evenity and not the other way around. You might consider Tymlos instead. The dose is adjustable so you can start low and move up, to minimize side effects.

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I was able to get two doses then my insurance changed and it got denied. I have severe osteoporosis. I did two years of forteo in 2014 then moved on to prolia. I did great until I missed a dose during covid. Back then forteo was the best choice. If my insurance would cover it, I would go on it. It will take years of prolia to gain bone again. I guess it depends on how bad your osteoporosis is. I’m 57 and can’t do anything I could do prior to missing that Prolia dose.

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Not sure if I have replied to this site before so I'll start anew. I have taken Evenity 9 times now but noticed about 3-4 months ago (shots 5-8) that I had increased stiffness and some pain in my hands. Nothing intense at the beginning just one metacarpal knuckle on each hand. But that progressed over time to other joints. It seemed to get better by the end of the day. The discomfort seemed to ebb and flow. In November my right wrist/ base of thumb hurt to bend it if I tried to pick something up. The ortho doc said arthritis and maybe that is true I am older. But I started to question that Evenity might be a contributing factor. My endo didn't think so and the ortho wouldn't commit but said I had arthritis and thought the stiffness could be a connective tissue thing. I waited 6 weeks between shots and my joints felt better but it just wasn't clear the role of Evenity was playing . I wanted to continue with the drug my bone density in my spine is low and it offered to increase that. So I did a little experiment with me the subject. I took the 9th shot and within 3 days the stiffnesss returned and the pain in my wrist at the base of the thumb has gotten worse. It's been two weeks and the stiffness and joint pain is still with me; voltaren and tylenol help plus keeping active. I saw on a previous post the half life of Evenity is 12 days so I have fond hopes by the end of 1 month the drug will be decreased enough to alleviate the joint issues. At any rate I will no longer be taking Evenity. I'm comfortable with my decision and on the plus side I have 9 months of gains and that will just have to be enough. I'll probably follow up with Reclast.

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@ann707

Not sure if I have replied to this site before so I'll start anew. I have taken Evenity 9 times now but noticed about 3-4 months ago (shots 5-8) that I had increased stiffness and some pain in my hands. Nothing intense at the beginning just one metacarpal knuckle on each hand. But that progressed over time to other joints. It seemed to get better by the end of the day. The discomfort seemed to ebb and flow. In November my right wrist/ base of thumb hurt to bend it if I tried to pick something up. The ortho doc said arthritis and maybe that is true I am older. But I started to question that Evenity might be a contributing factor. My endo didn't think so and the ortho wouldn't commit but said I had arthritis and thought the stiffness could be a connective tissue thing. I waited 6 weeks between shots and my joints felt better but it just wasn't clear the role of Evenity was playing . I wanted to continue with the drug my bone density in my spine is low and it offered to increase that. So I did a little experiment with me the subject. I took the 9th shot and within 3 days the stiffnesss returned and the pain in my wrist at the base of the thumb has gotten worse. It's been two weeks and the stiffness and joint pain is still with me; voltaren and tylenol help plus keeping active. I saw on a previous post the half life of Evenity is 12 days so I have fond hopes by the end of 1 month the drug will be decreased enough to alleviate the joint issues. At any rate I will no longer be taking Evenity. I'm comfortable with my decision and on the plus side I have 9 months of gains and that will just have to be enough. I'll probably follow up with Reclast.

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I appreciate that knowledge. My doctor tried to push it on me and I was afraid but I went ahead and did the two doses. I also got a Covid booster in between. I have been sick every sense so I have no idea what caused it but my insurance only covers Prolia so that’s what I’m sticking with, but thank you so much for that information. I have one question do you have pain in your arm Where they gave you the shot? I still feel pain where I received the shots .

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The thing it, bone growth causes "growing pains" according to my doc.

Nine months is a good chunk of time. I have been told that with Tymlos the first 6 months has the most improvement and then a gentler curve in the next 6, then if taken longer, an even gentler curve.

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