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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@laverne23

I don’t know if you have had your shots yet or not. But after much research and reading comments from others, I decided to get my shots in my belly. I also took them out of the fridge about three hours before my appointment so it was totally at room temperature. I also put an ice pack on the area after each shot to lessen any swelling (the nurse provided the ice pack). Hope this bit of information on my experience helps 😀

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I've had 2 sets of Evenity injections so far. The 1st time, they gave them in the flabby part of both arms that hangs down : ) She injected slowly, but it wasn't too bad. BUT, by mid afternoon later both began to feel sore; by dinner both were very sore; and by bedtime, they were both extremely sore. I couldn't even bear them touching the sheets. I ended up sleeping in a recliner with my arms across my chest, so the backs of my arms weren't touching anything. And I have a high pain tolerance (3 babies delivered naturally, no meds). My arms were sore with tender (almost painful) lumps where injected for a week with pain radiating almost to my elbow, esp. on the left. The good news is I felt better each day and I carried out my normal active routine, being careful not to bump my arms the first few days and had no other issues.
I decided to have the 2nd set of Evenity injections in my abdomen. MUCH BETTER!!! Just tender to touch for a couple days, with a bit of a lump under the skin where injected. I was able to sleep as usual in bed.
I definitely plan on having the injections in my abdomen, if they'll give them there from now on.

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After getting injections in your stomache, put an ice pack on the injection site for a bit before you get the second shot. Then do the same at the second injection site. Definitely helps me. Also, I take it out of the fridge about three hours before my appointment to make sure it is at room temperature. If it’s still cold at the time of injection, you may experience pain. Also, slow injection is important. Just what works for me.

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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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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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@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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@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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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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@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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@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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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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@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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