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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Follow up on request for information after my current bone density test and visit with my Endocrinologist.
Quick recap: Began with Evenity June, 2020; my bone density test in August, 2021 showed good improvements in both spine and hips. Doctor was very pleased. Followed up with Reclast in 2021 and 2022, still maintained good scores. However my bone density test in August, 2023 showed slight decrease in my hip areas, and very slight decrease in my spine. Of course I was disappointed, as was my doctor. I took a blood test and a 24 urine test to see if there was a problem with losing calcium through my urine. My urine test results were normal. Doctor did mention that Evenity only works for the first 6-12 months. Says everyone adjusts differently to the outcome of taking Evenity. Doctor has recommended another Reclast infusion and then we will discuss treatment options next year. Additionally, I have begun strength exercise classes, which I had never done. He only recommends calcium through foods and not through supplements.

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@arlene7

Follow up on request for information after my current bone density test and visit with my Endocrinologist.
Quick recap: Began with Evenity June, 2020; my bone density test in August, 2021 showed good improvements in both spine and hips. Doctor was very pleased. Followed up with Reclast in 2021 and 2022, still maintained good scores. However my bone density test in August, 2023 showed slight decrease in my hip areas, and very slight decrease in my spine. Of course I was disappointed, as was my doctor. I took a blood test and a 24 urine test to see if there was a problem with losing calcium through my urine. My urine test results were normal. Doctor did mention that Evenity only works for the first 6-12 months. Says everyone adjusts differently to the outcome of taking Evenity. Doctor has recommended another Reclast infusion and then we will discuss treatment options next year. Additionally, I have begun strength exercise classes, which I had never done. He only recommends calcium through foods and not through supplements.

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@arlene7 Thank you for sharing your journey. Sounds very positive cept for the last yr of reclast. Hopefully, you can maintain your gains by adding the strenght training classes you stated 🥰. I guess the Dr had a reason for not trying a different bisphosphonate? Just curious... in case I run into this in the future.

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@gravity3

Just started evenity and my endocrinologist is suggesting prolia post evenity. Would be very Interested to know what your prolia journey is like when you begin.

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Did you make gains from Evenity treatment?

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@gretch19

Did you make gains from Evenity treatment?

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I've just had one so far. Will report as I get further along

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@rita55

Thank you very much! I am 65 and started Evenity also in Nov 2020, because of my osteoporosis- I hope she keep doing well- God Bless her

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@rita55 how was your year on Evenity? My doctor is prescribing it and my insurance is covering it, thank goodness. BUT, I'm seeing so many stories of awful experiences while on E. Thanks in advance for your story.

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@vrgarden

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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@vrgarden Have you had any other adverse reactions? I'm nervous about starting Evenity. (Doc prescribed and insurance approved.) I'm reading such awful stories about side effects.

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@ligg

@vrgarden Have you had any other adverse reactions? I'm nervous about starting Evenity. (Doc prescribed and insurance approved.) I'm reading such awful stories about side effects.

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Do you mind sharing your age? I am 75 and wondering (to all participants) if age plays a part in weighting possible side effects against possible positive outcomes. I definitely does for me.

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@ligg

@vrgarden Have you had any other adverse reactions? I'm nervous about starting Evenity. (Doc prescribed and insurance approved.) I'm reading such awful stories about side effects.

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I haven't had any adverse effects--just sore arms the 1st time. The 2nd time in the abdomen, very minimal discomfort--only to touch. So I'm ready to continue with my 3rd next Tuesday, hopefully in my abdomen.

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@gravity3

Do you mind sharing your age? I am 75 and wondering (to all participants) if age plays a part in weighting possible side effects against possible positive outcomes. I definitely does for me.

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Not at all--I'm 74 and fairly active.

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@dmort

Hi! My doctor has prescribed Evenity for my osteoporosis. I’m extremely afraid of the major cardiovascular side effects. Does anyone know how long these major side effects last (i.e. most at risk for 3 days after injection)? Also, why does this medication cause those particular side effects when other osteoporosis medications do not? I’m expecting to get a call soon to set up my first shot so any information would be greatly appreciated.

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@dmort I'm reading your comment on mayoclinic.org from 2021 and wondering if you went through with the 12 month dosage? Did you go through with it? I'm insurance approved and doc recommended to start Evenity but nervous about the side effects. Could you share your experience? Thank you in advance.

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