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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Profile picture for passerby @passerby

@arlene7
Thank you . I'm pretty surprised to read you and others taking these meds for years. I had no idea that could happen.
Let me explain my message - CAD is coronary artery disease. thankfully I haven't had heart attack or stroke. the warning on evenity almost sounds like it could cause one.
about getting the money to pay for it, my dr said most insurance doesn't cover it & it's over $1000/mo. I said it would cut into my savings a lot & she said 'but only for 12 mo'. I said maybe I could find a grant to help pay for it like we get to pay for husbands chemo pills.
Now I'm reading some of you have gone on & off of it and had to take other meds too.
I know all meds have their potential side effects but evenity list some scary ones - maybe im overreacting

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@arlene7
Did you get a chance to read my reply?
The medicine will cost me $490/mo. I found out yesterday
Please update us with your current assessment thank you

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Profile picture for laura @laura1961

@passerby I have refused all Osteo drugs for 30 years the Drs have wanted me to take. I am glad I have refused them as I dont know where I would be now if I did not refuse them. They say you can only take certain drugs before they start to do the opposite from what i have researched over the years. Evenity is no different I researched and was told by the Endocrinologist you can only take it for 1 year.

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@laura1961 thank you Laura. the bone specialist just called me again. She wants my answer in a week. She said if I can't do Evenity she'd start me on Reclast. She keeps saying she doesn't want to see me have another fracture & my numbers aren't good. -5 in wrists. -3+ and -4 in others. She said 'for 12 months'. Then on to something else for another year. I'm 72.5. No caregiver except husband should anything happen. The NP understands my feelings even with the heart disease factor on my end. I'm so confused. If I hadn't picked my dog up off the couch without bending my knees it never would have happened (compression fracture in Aug) worse pain I've ever felt. Did it to myself.

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Profile picture for laura @laura1961

@passerby The necrosis of the jaw is the worst s/e of all these drugs for Osteoporosis. That is why I have never taken any over the last 30yrs after being diagnosed at just 30. I did not take as much notice of the other s/e but they do not sound good

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@laura1961 If you don’t mind my asking, how are you managing your osteoporosis? Have you made improvements in your density?

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Profile picture for passerby @passerby

@arlene7
Did you get a chance to read my reply?
The medicine will cost me $490/mo. I found out yesterday
Please update us with your current assessment thank you

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@passerby
I did....Because I go to an infusion center for injections, it is covered by Medicare Part B and co-insurance (after a deductible of $257), therefore, my cost is $0.

My honest opinion is that it all depends on each individual's specific situation, medically and financially. My family has a history of heart disease, but fortunately, I have been managing my high cholesterol for years and have tried to maintain a healthy diet, etc. When I decided to take Evenity, I spoke with my cardiologist, who had treated both my parents as well, and he agreed I should take it. Therefore, it made my decision easier. Yes, I was afraid of the side effects; however, I felt I should try. Evenity did help my bones, so it worked for me. Hoping my second go-around with Evenity will be successful as well.

Please let me know if you would like more information.

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Profile picture for beachesanddreams @beachesanddreams

@laura1961 If you don’t mind my asking, how are you managing your osteoporosis? Have you made improvements in your density?

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@beachesanddreams I dont know I haven't had a BD test for probably nearly 2yrs, it could be due. I have been spending so much time trying to research the seizure drugs. I was told by the Exercise Physiologist that my fractures will heal. I am trying to build up to exercises every 2nd day again. Will have to check when they are due, they are not good I know that. I have also just started 4-5 Prunes a day the Drs are now talking about.

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Profile picture for laura @laura1961

@beachesanddreams I dont know I haven't had a BD test for probably nearly 2yrs, it could be due. I have been spending so much time trying to research the seizure drugs. I was told by the Exercise Physiologist that my fractures will heal. I am trying to build up to exercises every 2nd day again. Will have to check when they are due, they are not good I know that. I have also just started 4-5 Prunes a day the Drs are now talking about.

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@laura1961 The news on prunes was a surprise to me, but an easy thing to work into my diet every day.

We can all only do what we can. Certain health issues can become overwhelming, and it can be very difficult.

I learned it’s best to prioritize your care; do the thing that is most concerning to you first. That took a lot of the stress off my mind. It sounds like you’re doing that too.

Wishing you wellness and wellbeing…✨

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