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 nwhiker @nwhiker

Thank you for trying to confirm some of my concerns. It states on Drugs.com that chemo and radiation may increase the risk of osteonecrosis. When I was a dietitian and charting at the desk in each unit, the first thing the doctors did every morning was to check their drug stocks. I think they are defending these drugs to increase their own assets. I left a call with the Amgen side effects department due to the edema. My legs are so swollen, and it is not my heart per the cardiologist. Thanks for all of the info on your supplements and diet.

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@nwhiker
I keep thinking this too
“think they are defending these drugs to increase their own assets”
None of the drs are acknowledging the CAD I’m living with

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Profile picture for passerby @passerby

@arlene7
My rock & a hard place too. I was dx with CAD a couple years ago. They want me on evenity asap as soon as a way to pay for it.
Would like to know how it played out for you since you started 2020
Thank you

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@passerby

I'll add my experience on evenity. No noticeable side effects and very good results. Not my first drug for Osteoporosis.

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Profile picture for passerby @passerby

@arlene7
My rock & a hard place too. I was dx with CAD a couple years ago. They want me on evenity asap as soon as a way to pay for it.
Would like to know how it played out for you since you started 2020
Thank you

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@passerby

After completing my first year on Evenity, my scans improved. The next three years I had Reclast infusions to try to maintain my bone growth. Then the next year was a wait and see. Unfortunately, my next scans once again showed a decrease therefore, I have started Evenity once again. I am on my second month and all going ok. Only side effect has been a slight heachache, but I take Tylenol and drink lots of water.
I am confused as to "as a way to pay for it".....for CAD?

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Profile picture for arlene7 @arlene7

@passerby

After completing my first year on Evenity, my scans improved. The next three years I had Reclast infusions to try to maintain my bone growth. Then the next year was a wait and see. Unfortunately, my next scans once again showed a decrease therefore, I have started Evenity once again. I am on my second month and all going ok. Only side effect has been a slight heachache, but I take Tylenol and drink lots of water.
I am confused as to "as a way to pay for it".....for CAD?

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@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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Profile picture for gravity3 @gravity3

@passerby

I'll add my experience on evenity. No noticeable side effects and very good results. Not my first drug for Osteoporosis.

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@gravity3
Thank you so much. I read a lot of patient reviews & only 1 person out of many said that. The rest mostly said they wished they'd never taken it & commented on some of the side effects they have

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I am up to month three. No side effects at all. My insurance covers it. I have Florida Blue.

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I have a prescription from Mayo Rochester endocrinology for Evenity. I am in AZ for the winter and want the monthly injections to be given here. Mayo AZ endocrinology will not prescribe it. I want to find an infusion facility (attached to a large hospital network or not) that will accept the Rochester prescription and provide the service. I have not initiated the first treatment yet so will be starting from scratch here in AZ. Has anyone had Evenity injected in AZ based on an out of state prescription? What facility?

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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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@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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Profile picture for passerby @passerby

@gravity3
Thank you so much. I read a lot of patient reviews & only 1 person out of many said that. The rest mostly said they wished they'd never taken it & commented on some of the side effects they have

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@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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Profile picture for dianat @dianat

I am up to month three. No side effects at all. My insurance covers it. I have Florida Blue.

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@dianat Good to hear I hope it works well for you.

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