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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hudsonlady | @hudsonlady | Sep 16, 2023

Just had 6th shot with no after effects. The only glitch came after the 2nd shot when I had a tooth extracted. Docs were useless for advice but oral surgeon recommended waiting a month for system to clear, have extraction, then wait 1-2months to resume.

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laverne23 | @laverne23 | Sep 16, 2023
In reply to @susanfalcon52 "I recently had my 4th injections of Evenity. I don’t seem to have much trouble with..." + (show)
@susanfalcon52

I recently had my 4th injections of Evenity. I don’t seem to have much trouble with the injection site pain. The only side effect that I might be having is fatigue the day after.
I have read posts on this site where people have said that they were okay until their 5th or 6th injections and then they started having terrible reactions.
I am hoping that doesn’t happen to me. I will hang in there until injection 12 as long as I can manage symptoms. People are getting great results with Evenity.

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The way my doctor explained it to me is that when you get your first injection, your body doesn’t know what it is or how to reaction to the medication. After two or three shots, the body is starting to recognize it as an enemy and starts to react to it - and that is when side effects worsen. Hope I’m explaining it correctly - it made sense to me when the doctor explained it to me. Basically, the body recognizes it as a foreign substance and doesn’t figure out how to respond to it until after a few shots.

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lab54 | @lab54 | Sep 16, 2023
In reply to @lashu "Thanks for your openness about these issues, I really appreciate it. My neuropathy has been around..." + (show)
@lashu

Thanks for your openness about these issues, I really appreciate it. My neuropathy has been around for at least thirty years and nothing has helped much. Gabapentin alone does not help a great deal but lately, with amatriptiline, it seems to alleviate it to a considerable extent! I hope it continues in this way.
The jaw is threatened with necrosis, but cancer is something I had not seen before, though it makes sense, since necrosis is dying tissue and I've found mixed reviews on the extent to which anything will help the problem. If caught early it has been said that antibiotics work, but even that was an ify promise.
Painful joints seems to happen frequently with patients. I had not heard of a rash before, but I certainly believe you. Swollen ankles and feet are also a new symptom to me, but it makes sense insofar as cardio and stroke issues are warned when taking it and those both engage circulatory health.
I postponed the injection until October, under a caution from someone in health field. So I await further advice and information.
How serious were your T scores, or however your OP was diagnosed. Am praying for your good outcomes, somehow, in spite of these problems.

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I noticed after my injections swelling in my feet & ankles. Joint paint has gotten worse but I have Osteoarthritis in my hands. I also have Cardiomyopathy so that’s a big concern since the swelling. My rash is under control with antibiotics but can’t live on them forever. I had a dexa bone scan & my scores showed I definitely had Osteoporosis & was a high risk for fractures & breakage. Because of my low blood pressure the doctors won’t increase my water pill. Thank you for checking in on me & I wish you the very best of luck in October. I hope & pray you have NO side effects & your bone health improves. Please let me know how you did after.

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CaliforniaK | @californiakaren | Sep 16, 2023

It's been mentioned here maybe already but I recommend a Youtube video which shows a medical presentation earlier this year on the effects of taking different osteoporosis drugs on bone density. It showed that the order you take the drugs makes a big difference on the results. The video is called "Combined and Sequential Approaches to Osteoporosis Therapy" in which Dr. Leder summarizes the results of different drug studies. It is a presentation for doctors, and all drug names are the non-brand name (ie. Evenity is robosozumab). So look up all the drug names first and write them down to help follow along. I had to watch the video more than once. Dr. Leder's presentation showed that it is best to start with a drug like Evenity (de novo meaning the first osteoporosis drug you take) and then change to an antiresorptive like Fosmax, Reclast, Polia, etc. He also showed the decrease in bone density if Evenity is not followed with another medicine to lock in the gains. He mentioned that following Evenity with Prolia is fine to lock in gains, but if you stop Prolia your bone density plummets.

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1 reply
windyshores | @windyshores | Sep 16, 2023
In reply to @californiakaren "It's been mentioned here maybe already but I recommend a Youtube video which shows a medical..." + (show)
@californiakaren

It's been mentioned here maybe already but I recommend a Youtube video which shows a medical presentation earlier this year on the effects of taking different osteoporosis drugs on bone density. It showed that the order you take the drugs makes a big difference on the results. The video is called "Combined and Sequential Approaches to Osteoporosis Therapy" in which Dr. Leder summarizes the results of different drug studies. It is a presentation for doctors, and all drug names are the non-brand name (ie. Evenity is robosozumab). So look up all the drug names first and write them down to help follow along. I had to watch the video more than once. Dr. Leder's presentation showed that it is best to start with a drug like Evenity (de novo meaning the first osteoporosis drug you take) and then change to an antiresorptive like Fosmax, Reclast, Polia, etc. He also showed the decrease in bone density if Evenity is not followed with another medicine to lock in the gains. He mentioned that following Evenity with Prolia is fine to lock in gains, but if you stop Prolia your bone density plummets.

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Evenity, Forteo or Tymlos can all be used first.

Leder's video is great. McCormick's book "Great Bones" covers the same ground in detail.

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dreamjean1958 | @dreamjean1958 | Sep 17, 2023
In reply to @susanfalcon52 "I recently had my 4th injections of Evenity. I don’t seem to have much trouble with..." + (show)
@susanfalcon52

I recently had my 4th injections of Evenity. I don’t seem to have much trouble with the injection site pain. The only side effect that I might be having is fatigue the day after.
I have read posts on this site where people have said that they were okay until their 5th or 6th injections and then they started having terrible reactions.
I am hoping that doesn’t happen to me. I will hang in there until injection 12 as long as I can manage symptoms. People are getting great results with Evenity.

Jump to this post

Just letting you know. my endocrinologist took me off after 6 . He said Studies show you get the most benefit from the 1 st 6 months . I was having anabolic reactions . They started the 4 th injection . The 5 th and 6 th got worse . He put me on Prolia now . I have had one injection. I didn’t have any side affects . For me Prolia was the only one I could go on. He said my bones are not good. No sugar coating

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1 reply
lauratys | @lauratys | Sep 18, 2023
In reply to @dreamjean1958 "Just letting you know. my endocrinologist took me off after 6 . He said Studies show..." + (show)
@dreamjean1958

Just letting you know. my endocrinologist took me off after 6 . He said Studies show you get the most benefit from the 1 st 6 months . I was having anabolic reactions . They started the 4 th injection . The 5 th and 6 th got worse . He put me on Prolia now . I have had one injection. I didn’t have any side affects . For me Prolia was the only one I could go on. He said my bones are not good. No sugar coating

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This is good information for everyone. I wish I had stopped after 6 months. Up to that point had no adverse reactions. I did 11 months and am still struggling with some degree for arthralgia after stopping Feb 2023. I never had any arthritis pain prior to Evenity. I never knew about the 6 month benefit window.

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2 replies
windyshores | @windyshores | Sep 18, 2023
In reply to @lauratys "This is good information for everyone. I wish I had stopped after 6 months. Up to..." + (show)
@lauratys

This is good information for everyone. I wish I had stopped after 6 months. Up to that point had no adverse reactions. I did 11 months and am still struggling with some degree for arthralgia after stopping Feb 2023. I never had any arthritis pain prior to Evenity. I never knew about the 6 month benefit window.

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I was told that Evenity is more of a bone builder for the first 6 months and then is more anti-resorptive for the second 6 months.

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1 reply
lauratys | @lauratys | Sep 18, 2023
In reply to @windyshores "I was told that Evenity is more of a bone builder for the first 6 months..." + (show)
@windyshores

I was told that Evenity is more of a bone builder for the first 6 months and then is more anti-resorptive for the second 6 months.

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That is true and in hindsight I might have switched to just an anti-resorptive after 6 months. I'm on Fosomax now and think I am sensitive to these meds re:muscle aches/joint pain but trying to figure that out.

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ann707 | @ann707 | Sep 18, 2023
In reply to @lauratys "This is good information for everyone. I wish I had stopped after 6 months. Up to..." + (show)
@lauratys

This is good information for everyone. I wish I had stopped after 6 months. Up to that point had no adverse reactions. I did 11 months and am still struggling with some degree for arthralgia after stopping Feb 2023. I never had any arthritis pain prior to Evenity. I never knew about the 6 month benefit window.

Jump to this post

Did you follow up with another bisphosphonate after Evenity?

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