Has anyone experienced severe insomnia with Evenity?

Posted by tkdesign @tkdesign, Apr 7, 2023

Struggling to find an osteoporosis drug I can tolerate...this felt like my last hope, but after first injection, I literally could not enter any deep restful stages of sleep. Went on for nearly 30 days. Felt like I was going crazy, could not drive or work. Trying to figure out if it were the drug or something else, if I should give it another try.

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You're absolutely right. Our hospital network had been so much better, then the profiteers took over and things changed.

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I don’t understand what the doctors have to lose by telling us the truth about the drug.
The infusion center, sure, but the doctors don’t work for the drug companies.

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After my 1st Evenity injection I didn’t sleep for over a week. It’s now been 5 weeks & just had my second round of shots. My sleep pattern has improved significantly thank God! The infusion place has it down as a side effect of the Evenity for future collection of data. The drug is still new & we need too tell our doctors what we experienced. Your not crazy & I know what sleep deprivation feels like. I felt like I drank coffee all day & was bugged eyed the entire night. Hope things have improved for you. I gave it one more try too see if all goes well. That was yesterday but have painful arms & noticed my face is all broken out. I have a beautiful complexion & it’s so not like me too have a red rash all over my face. Started 1 week ago & is worse. Not saying it’s the Evenity but something is making me break out.

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@lab54

After my 1st Evenity injection I didn’t sleep for over a week. It’s now been 5 weeks & just had my second round of shots. My sleep pattern has improved significantly thank God! The infusion place has it down as a side effect of the Evenity for future collection of data. The drug is still new & we need too tell our doctors what we experienced. Your not crazy & I know what sleep deprivation feels like. I felt like I drank coffee all day & was bugged eyed the entire night. Hope things have improved for you. I gave it one more try too see if all goes well. That was yesterday but have painful arms & noticed my face is all broken out. I have a beautiful complexion & it’s so not like me too have a red rash all over my face. Started 1 week ago & is worse. Not saying it’s the Evenity but something is making me break out.

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Good to hear your insomnia let up. Mine continued the entire first month and another week longer. I didn't go back for a second shot. I may try again in the future, but the painful arms weren't great either, and didn't realize you get two shots every month, not just one! I'm just so frustrated, every drug I've tried made me feel awful in some way. I've had chronic illness half my life, so adding to the daily pain just scares me away.

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@tkdesign

Good to hear your insomnia let up. Mine continued the entire first month and another week longer. I didn't go back for a second shot. I may try again in the future, but the painful arms weren't great either, and didn't realize you get two shots every month, not just one! I'm just so frustrated, every drug I've tried made me feel awful in some way. I've had chronic illness half my life, so adding to the daily pain just scares me away.

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I can relate with the painful arms. I could hardly wash my hair. Those first 2 shots were traumatic. I was very I’ll & getting no sleep didn’t help. Things have improved except a severe case of roscea all over my face. I don’t know if it’s related too Evenity but I’ve never had breakouts in my life. I gave it another try & trying too figure out what & why my face broke out? But if you feel like you need a break from these drugs do so. I have your back & you need to do what is best for you. Please keep me posted & I hope & pray that you feel better & enjoy life again. LAB54

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I had bad insomnia and Joint pain after the first dose.
It’s better after the second.

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@tkdesign

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.

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You said your sleep returned to normal till post 30 days injection. Did you finish the one year treatment?

I just had my 4th shot. My insomnia steadily got worse during theses months. Now I wake up just about every 2 hours. I didn’t relate this to Evenity until this morning and looked up online. Evenity website says it does affect sleep!

My question is: would this horrible pattern go away once I finish the shots? And has anyone taking sleeping aids and if they have helped?

I don’t have a choice but to continue. I have very severe osteoporosis and had several spinal fractures.

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I am awake every 3 hrs but I related it to the pain caused by Evenity. I too must finish my course. I only have 2 to go. Good luck.

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I got Evenity injections for 6 months and had extreme headaches and insomnia the whole time. I couldn’t sleep more than 1 1/2 - 2 hours at a time, 4-6 hours total each night. It was 6 months of hell for me. I finally told my endocrinologist I couldn’t live like that any longer and stopped the injections. I had anew dexa scan and the improvements were negligible. Definitely not worth doing another 6 months. Now she wants me to take a different drug but I always have bad side effects to all prescription drugs so I guess I’m going to have to just continue with my diet and weight bearing exercise and hope I don’t get any fractures

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@lynn3

I got Evenity injections for 6 months and had extreme headaches and insomnia the whole time. I couldn’t sleep more than 1 1/2 - 2 hours at a time, 4-6 hours total each night. It was 6 months of hell for me. I finally told my endocrinologist I couldn’t live like that any longer and stopped the injections. I had anew dexa scan and the improvements were negligible. Definitely not worth doing another 6 months. Now she wants me to take a different drug but I always have bad side effects to all prescription drugs so I guess I’m going to have to just continue with my diet and weight bearing exercise and hope I don’t get any fractures

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I was active and tried to take care of my bones without taking medication until spinal fractures started to happen this year.

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