Has anyone experienced severe insomnia with Evenity?

@tkdesign, I'm tagging a few members like @arlene7 @artscaping @pattyduerkop @elisabethv @gabiquinn @judith73 @windyshores @paala who have experience with Evenity to see if anyone experienced sleep issues.

You may also be interested in this related discussion:
- Anyone taken Evenity (romosozumab) for Osteoporosis? https://connect.mayoclinic.org/discussion/evenity-osteoporosis/

Insominia is listed as a known side effect, but not everyone encouters trouble with sleeping. Going without proper sleep for 30 days is rough and clearly limiting to your daily life. Yikes. Have you decided to get the next month's dose?

Hi Colleen, no I opted not to, to see how I felt, and just because, I need to work. I am single, live alone, don't have help to get places. My sleep improved after 25 days past first injection, continues improved. I'm rather afraid to try another dose. I've had intolerance issues with so many related drugs, don't know what to try next.

I know this post is several months old, but I really wish I’d seen it before getting my first injections 4 days ago. I already have chronic insomnia and take meds to sleep, the third and fourth nights after my injections my sleep was horrible despite meds ( I took an additional sleeping pill in desperation and maybe got 4 hours broken sleep). I know this is different from my normal insomnia because usually I rarely have trouble falling asleep, just staying asleep, and this was both. I don’t plan to get the next dose unless this miraculously resolved in the next day or so. I won’t do Prolia, I can’t mentally handle the idea of potential side effects for months. Running out of good options. 😞

Hi there, I know how you feel. My sleep didn't return to normal till post 30 days injection, and it was really awful. This was literally like my last hope for some osteoporosis drug I could handle without a severe side effect. My dr was so awful, she didn't even try to follow up with me to try another therapy after that, just forgot me. No nurse called, nothing. When you feel like a number on top of having a rough time with "medicine" how is someone supposed to feel ok continuing? I just felt like another experiment. Another crazy thing, I called the company that makes Evenity to report what happened, to see if insomnia was something others had reported, and they SAID no. When you look up side effects on drug info sites it is listed all the time. But a company rep said NO. That is unbelievable to me. Well now it is reported, so hopefully they will not continue misleading others. If you can't sleep, you can't function. I've had sleep troubles for a long time, so especially for those who already have this issue, that has to be clearly stated as a side effect.

The insomnia was awful from the very first injections. I hung in there for 3 rounds but just couldn't do anymore. I began having heart palpitations, daily headaches, and loss of energy. I called my endocrinologist and after 4 attempts to speak with him, he finally called me back. He informed me that NO ONE ELSE had experienced such symptoms. Never going back there.

It's rough. My osteoporosis specialist here said no one of her patients had had side effects like that, or any for that matter. First, I don't believe it..many women just tough it out and don't report. Second, just because a doctor doesn't see something in THEIR set of patients, they think that is how it is everywhere. But if a doctor isn't open minded enough to realize their little corner of the world is not the world entirely, or isn't willing to discuss alternatives with you, it's best to go elsewhere for care. I would report your side effects to the drug company that makes Evenity too...they need to know what people are experiencing.

My insomnia has gotten better aft 3 nights of hell, I’m going to see how it goes. Still unsure if I’ll get the next injection. I also had extreme pain in one of my arms the day of and day after the injections, and was told no one has that side effect. Well, they do now.

Neesie,
None of the medical professionals that I encounter will discuss side effects with me. I am mostly referring to the nurse practitioners who give me the injections. This frustrates me as I am confident that other patients have told them about side effects. The only side effect that I’ve had is fatigue which only lasts a day. When I bring it up, they just act like they’ve never heard of it before.
When I ask about side effects that other patients report, they hem and haw and really say nothing.
I feel that they have been instructed to do this. It damages my trust in them and the entire process.
I go back for my fourth injections in a couple of weeks. I plan to bring this up.

I never went back for my 4th injections. I suffered for insomnia from the start. When my heart palpitations got much worse, I tried to get in touch with my endocrinologist, he did not return my calls. By the time my condition had worsened to the point I had the wear a heart monitor for 72 hours, he finally returned my call, only to tell me no one else in clinical trials had experienced these side effects. Just from reading the hand out I received at his office months before, I knew he wasn't telling me the truth. I'm finished with Evenity and him. I lost all my confidence.

That's really sad to hear. The worst part is providers not returning calls. Did they go into medicine to be helpful and heal or not? But then the insurance companies pressure them to see so many patients in so little time. Our whole medical system I think tends to attract drs more profit motivated than healing...if private insurance for profit wasn't involved, we'd have much better outcomes.