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 njx58 @njx58

Question about Evenity and insurance (non-Medicare): if it's administered at the doctor's office, it's a medical claim, I know. But, how would I know how it is priced? I know what a normal doctor visit costs, and if the doctor does additional tests, but I have no idea how an injection would be priced. If Evenity is not in the plan's formulary, does that mean the doctor would not get paid for doing an injection?

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@njx58
I actually just got a call today from my doctor's office telling me that my insurance is covering the Evenity injections. I only have a copay. The copay is the same as I pay for doctor visits-$45.

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Profile picture for beachesanddreams @beachesanddreams

@lgreg I took Alendronate for four years. I had zero side effects. I went back into osteopenia, but then back into osteoporosis in two areas because apparently, once you go from osteoporosis to osteopenia, you're supposed to take a break from it. Two gynecologists neglected to take me off.

Just remember: you cannot eat or lie down for 30 minutes after you take it. Drink water in that 30 minute period. I used that time to meditate and imagine the drug making my bones stronger.

Good luck to you!

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@beachesanddreams thank you so much. You are very kind to take time to answer

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My evenity experience has left me with severe excerbation of OA , left femur pain due to cortisol thickening, leg, and left foot pain. Multiple test have been unsuccessful at dx. I now walk with a cane have stupped back due to an very unsteady gait and can no longer enjoy travel, walking or shopping. PT has not help and my hottub no longer helps OA. I would not recommend it. I am only 76 and walk worse than my sister of 80 yo. Reclast was not effective for osteopenia either. Good luck.

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Profile picture for Judy Shepherd @jdshep

My evenity experience has left me with severe excerbation of OA , left femur pain due to cortisol thickening, leg, and left foot pain. Multiple test have been unsuccessful at dx. I now walk with a cane have stupped back due to an very unsteady gait and can no longer enjoy travel, walking or shopping. PT has not help and my hottub no longer helps OA. I would not recommend it. I am only 76 and walk worse than my sister of 80 yo. Reclast was not effective for osteopenia either. Good luck.

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@jdshep
I too have not had a pleasant experience with Evenity & like you, was to the point where I was going to ask my Dr. For a Handicap license for the car. Riddled with pain in my hip & groin area & severe Achilles Tendonitis, trouble ambulating & cannot sit comfortably. Back issues, etc

Luckily this month I had a tooth extracted & have been Evenity free for 6+ weeks. I have also developed a cardiac issue, so am seeing Cardiologist next week. My hip & foot pain has abated at least to the point where I can move again. I’m 6 injections in, would like to finish, but the Cardiology appointment & results are going to determine what I do moving forward….I feel your pain & pray for your well being.

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Profile picture for lgreg @lgreg

@beachesanddreams thank you so much. You are very kind to take time to answer

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@lgreg It was my pleasure! Mayo Clinic Connect has been a great source of kind support for me, so I seek to contribute the same.

Wishing you and yours a lively and lovely Thanksgiving!

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Profile picture for dbivins @dbivins

During chemo and radiation for invasive ductal breast cancer I ceased my Prolia injections. I had osteoporosis before the cancer diagnosis. I had also begun letrozol, for a 5 1/2 year period. I waited 2 years until my next Dexascan (before continuing Prolia) that showed my bone density in many places to be -4. My doctor recommended Evenity. I returned to the Prolia until I had time to learn about Evenity. I went to the MCV/VCU head of bone health and discussed it with her. She said if you have had radiation of any kind, Evenity could cause bone cancer. I was glad I took the time to investigate it. I am still on Prolia and Bone-Up and Ultra Bone-UP, and Vital Proteins Bonine Collagen Peptides. Seven years later, and my last Dexascan showed I had improved to osteopenia in most areas. There are few weak spots at -1, -2.
While I was undergoing treatment for breast cancer I investigated Prolia. I found a study in University of South Carolina about Prolia and breast cancer. They claimed it caused mice to get breast cancer. I did get breast cancer after several years of taking Prolia. Prolia is manufactured by Amgen. When I received my Estrogen Positive Breast Cancer Chemo, it was also made by Amgen. One day after my Chemo, I would return to get a Neulasta injection to improve my blood count. That was also made by Amgen, and in the fine print it said - May cause tumor growth. !! I really had no choice. It was the only one I had if I wanted to live. But the fact that all three products were manufactured by Amgen was cause for concern. I am now 9 years out, and truly grateful for my life and time to see my family, my children and grandchildren, and even a great grandchild!

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@dbivins
I had chemo and radiation for breast cancer 27 years ago. Did the person you saw a VCU mention the time frame for using Evenity after cancer treatment? I have had seven Evenity infusions and now I am very worried about continuing after reading your post. I did read that one is more apt to get osteonecrosis if you have had chemo or radiation, just not sure if it is only recent treatments that will cause a problem with Evenity.

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Profile picture for nwhiker @nwhiker

@dbivins
I had chemo and radiation for breast cancer 27 years ago. Did the person you saw a VCU mention the time frame for using Evenity after cancer treatment? I have had seven Evenity infusions and now I am very worried about continuing after reading your post. I did read that one is more apt to get osteonecrosis if you have had chemo or radiation, just not sure if it is only recent treatments that will cause a problem with Evenity.

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@nwhiker
No, unfortunately I did not ask how long one should wait. I remember her saying someone who has had radiation should not use Evenity. Not sure if that was forever, or for a certain length of time. I chose to continue Prolia injections every 6 months, plus Collagen Peptides in my coffee each morning, and Bone-Up Ultra 2 a day and Bone-Up Regular once a day. In two years I went from -4 in several areas of my spine and hips, to mostly osteopenia. I paid to have a CT scan of heart calcification in 2019. My % was 46. At the time I had been on Caltrate for years to improve my bone density. Caltrate comes from stone. I switched to Bone-Up which is from cows. and my recent CT scan was 1% on the calcification scale. My eating habits have changed some. I eat dark chocolate, avocados, eggs, lots of veggies, nuts and use olive oil instead of butter when I can.

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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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