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.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

gravity3 | @gravity3 | Sep 20 4:27pm
In reply to @gretch19 "Did you make gains from Evenity treatment?" + (show)
@gretch19

Did you make gains from Evenity treatment?

Jump to this post

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

REPLY
ligg | @ligg | Sep 21 6:31am
In reply to @rita55 "Thank you very much! I am 65 and started Evenity also in Nov 2020, because of..." + (show)
@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

Jump to this post

@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.

REPLY
ligg | @ligg | Sep 21 6:38am
In reply to @vrgarden "I've had 2 sets of Evenity injections so far. The 1st time, they gave them in..." + (show)
@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.

Jump to this post

@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.

REPLY
4 replies
gravity3 | @gravity3 | Sep 21 6:48am
In reply to @ligg "@vrgarden Have you had any other adverse reactions? I'm nervous about starting Evenity. (Doc prescribed and..." + (show)
@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.

Jump to this post

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.

REPLY
2 replies
vrgarden | @vrgarden | Sep 21 4:06pm
In reply to @ligg "@vrgarden Have you had any other adverse reactions? I'm nervous about starting Evenity. (Doc prescribed and..." + (show)
@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.

Jump to this post

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.

REPLY
vrgarden | @vrgarden | Sep 21 4:07pm
In reply to @gravity3 "Do you mind sharing your age? I am 75 and wondering (to all participants) if age..." + (show)
@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.

Jump to this post

Not at all–I'm 74 and fairly active.

REPLY
ligg | @ligg | Sep 21 10:30pm
In reply to @dmort "Hi! My doctor has prescribed Evenity for my osteoporosis. I’m extremely afraid of the major cardiovascular..." + (show)
@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.

Jump to this post

@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.

REPLY
1 reply
cat714 | @cat714 | Sep 22 6:20am

I'm 71 have had 6 injections with no side effects. Have nurse set out evenity to warm up. Do your stomach & have her inject slowly.

REPLY
susanfalcon52 | @susanfalcon52 | Sep 22 6:21am

I receive my 5th injections of Evenity next week. So far, no problems. Good luck to us all in this difficult journey.

REPLY
dmort | @dmort | Sep 22 10:01am
In reply to @ligg "@dmort I'm reading your comment on mayoclinic.org from 2021 and wondering if you went through with..." + (show)
@ligg

@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.

Jump to this post

Hi! I get it 100%. Took a while but after further scans I finally decided to go ahead with Evenity just this past spring. However, my insurance denied it and recommended that I try Tymlos first. Thinking they were just making me go with the cheaper drug to save them money I was very upset. So, I did my research. Turned out that Tymlos had reported better outcomes and no longer had a black box warning. So, my insurance company was actually looking out for me.
Although the black box warning was bone cancer it had not been discovered in people, so it was downgraded. Unfortunately, it's given daily by injection at home for 18 months. Super easy to administer with a pen injection. The Tymlos nurse walked me though the first time and taught me some tips and tricks. I've had a little bit of nausea, but it goes away or is prevented with some food in my stomach. Since it's given daily any side effects only last for a couple hours. If you can't tolerate it you can stop and it's out of your system pretty quickly. My copay is completely covered by the manufacturer discount card. Sorry I can't tell you about my experience with Evenity. All I can say is do what's right for you. Don't hesitate to get a second opinion. I went to multiple doctors with the hopes of someone telling me I'll be fine without treatment. But unfortunately, after meeting with all of them and the testing showed it was needed. Good luck and best wishes!

REPLY
View MoreView Less
Please sign in or register to post a reply.