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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@windyshores

Breast cancer. Why can't you take Tymlos?

Evenity seems to be a great medication. I would worry about follow-up later. There will be more info as time goes on. The same company that makes Evenity makes Prolia so maybe that is why docs are pushing it-? I have no idea what someone who has already done Reclast does after Evenity. As you know Prolia (Xgeva) is also used for cancer patients.

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Contraindicated with a vascular necrosis

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@sus34

Contraindicated with a vascular necrosis

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Vascular necrosis or avascular necrosis? From radiation?

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@windyshores

Vascular necrosis or avascular necrosis? From radiation?

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A vascular necrosis, also called osteo necrosis…high level steroid induced problem in the course of cancer treatment

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@sus34

A vascular necrosis, also called osteo necrosis…high level steroid induced problem in the course of cancer treatment

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The term is avascular necrosis, all one word. There is also a condition called vascular necrosis. How does avascular necrosis relate to Tymlos but not Evenity? I am curious. I undertand growing necrotic bone could be an issue but Evenity also grows bone so wondering the difference. Don't want to be a pain but if you have time...

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No pain…Yes, you are correct.,..it is avascular necrosis..spell check problem. I do not recall the specifics, but was told I was not a candidate for Tymlos. Necrosis cannot be reversed..and could not tell you how the mechanics of Evenity would work in terms of the AVN effected bone. Good question.

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@dee5

Is anyone out there following any bone strengthening exercises? There are so many conflicting exercise videos out there. Would appreciate a link please. I do 30-45 mins walk at least 5 times a week. Just started doing weight bearing exercises but not sure if these are the right ones for osteoporosis.

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I posted a reply in a new discussion/thread: https://connect.mayoclinic.org/discussion/exercise-to-strengthen-bones-for-osteoporosis/

(I did not want to reply on this thread, since the subject of this thread is Evenity)

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@windyshores

I didn't ask because I don't want it. He just said "I would not use Prolia for you." Prolia affects a part of the immune system (Rankl inhibitor) and I have had cancer and have lupus. Also you cannot just stop it w/out something else. He may also have felt I was not a good candidate due to med sensitivities. Sorry I am not really sure. I now need bone growing meds but he will follow Tymlos with low dose Reclast, not Prolia.

If you do Prolia, you need to know what you will do afterwards because apparently there is a high risk of vertebral fractures when you go off.

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Hello Windyshores -- Can you provide more information about the protocol for low dose Reclast?

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Thank you everyone for this forum. It means a lot for me and I hope my experience might help but I apologize because English is not my mother tongue. I am starting Evenity next week in Switzerland after long hesitations. I discarded Forteo because I wasn’t ready for daily injections. I am 64. My T score is -4,6 for my spine. I had fractures since I was 14.

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@marcd

Hello Windyshores -- Can you provide more information about the protocol for low dose Reclast?

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I am not sure what you mean by your question on low dose Reclast protocol. I am currently on Tymlos. My doctor knows I am very sensitive to meds. After Tymlos he thinks I may only need a maintenance dose of Reclast and may even be able to go on and off of it. So he mentioned doing 1/4 dose. I would drink a lot of water, take tylenol and they would infuse very slowly. He would monitor my bone density/loss and adjust treatment accordingly. This all depends on my results after one year of Tymlos. I may continue on Tymlos, or Forteo (which can currently be taken longer) or add Evenity if my osteoporosis is still severe.

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@saz

Thank you everyone for this forum. It means a lot for me and I hope my experience might help but I apologize because English is not my mother tongue. I am starting Evenity next week in Switzerland after long hesitations. I discarded Forteo because I wasn’t ready for daily injections. I am 64. My T score is -4,6 for my spine. I had fractures since I was 14.

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Saz, hope you will continue to post as you begin Evenity. I should be a month or so behind you. Really hope it will help you... have you discussed with your doctor what to follow up with yet?

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