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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@willow10

I've had 11 dosages of Evenity and am scheduled for my last next week. After I received the first set of shots (there are 2, one in each arm for me), the nurse kept me there for 30 minutes to make sure I had no reactions, which I did not.
Now I go get my shot and drive home immediately. The only reactions I have are a little soreness at the injection site, which is gone within a day or so.

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I had skin reactions to Evenity. My legs swelled at the injection site and I had to apply medication to help with the soreness. I just think that drug is way too strong for 2 injections each time you go in.

hsum4

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@cat714

I'm so glad to hear that u had no problems with getting tooth pulled. I will be starting Evenity next month & that was my concern. What are you following up with?

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things got very complicated at the first of the year when my provider left the practice, and I was switched to an Endocrinologist. She suggested I go on Prolia after Evenity and just stay on it with no breaks, as she doesn't recommend the infusions like Reclast as follow-ups. Her patients that have been on Prolia have had no issues after several years on it. I was not convinced that was the best plan for me, and since the provider change, my insurance will not allow me to get another DEXA scan until December 2023. I'm just going to continue to live my life, take lots of Vitamin D and exercise until then. I wish I could see what improvement the Evenity did, but can't afford to pay for a scan myself.
Just as an aside, my Vitamin D was VERY low when they tested for it, so I've been on large daily doses (5000 a day) for the last 9 months and my last blood test showed that my levels were right in the middle of the preferred range now.
The Endocrinologist said that in her experience, a severe lack of Vitamin D can really affect the DEXA scan reading and that though my numbers showed I had severe Osteoporosis, she agreed that I should have enough improvement through the Evenity and the increased levels of Vitamin D that waiting until later this year to make further decisions is a fairly reasonable course of action.
I'm 69, fairly active, have good balance and haven't broken any bones that weren't traumatic (kicked by a horse many years ago). It's a gamble, but it is mine to take and I just didn't want to commit to years of Prolia until i feel that I really have no choice.

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@hsum4

I had skin reactions to Evenity. My legs swelled at the injection site and I had to apply medication to help with the soreness. I just think that drug is way too strong for 2 injections each time you go in.

hsum4

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Everyone certainly reacts differently to medications, that's for sure. Sounds like you need to discuss your reaction with your provider and see if an adjustment can be made to make it less stressful on your body. Good luck and take care. Keep in touch, we're all going through this journey together

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@willow10

things got very complicated at the first of the year when my provider left the practice, and I was switched to an Endocrinologist. She suggested I go on Prolia after Evenity and just stay on it with no breaks, as she doesn't recommend the infusions like Reclast as follow-ups. Her patients that have been on Prolia have had no issues after several years on it. I was not convinced that was the best plan for me, and since the provider change, my insurance will not allow me to get another DEXA scan until December 2023. I'm just going to continue to live my life, take lots of Vitamin D and exercise until then. I wish I could see what improvement the Evenity did, but can't afford to pay for a scan myself.
Just as an aside, my Vitamin D was VERY low when they tested for it, so I've been on large daily doses (5000 a day) for the last 9 months and my last blood test showed that my levels were right in the middle of the preferred range now.
The Endocrinologist said that in her experience, a severe lack of Vitamin D can really affect the DEXA scan reading and that though my numbers showed I had severe Osteoporosis, she agreed that I should have enough improvement through the Evenity and the increased levels of Vitamin D that waiting until later this year to make further decisions is a fairly reasonable course of action.
I'm 69, fairly active, have good balance and haven't broken any bones that weren't traumatic (kicked by a horse many years ago). It's a gamble, but it is mine to take and I just didn't want to commit to years of Prolia until i feel that I really have no choice.

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@willow10 my doc at a top hospital says the opposite: he will not prescribe Prolia because of the bone loss when stopped. Instead after Tymlos he wants me to do Reclast but will first infuse 1/4 dose to see how I do. He says that after an infusion of Reclast I might be able to take a med break. Not possible with Prolia.

Amgen makes both Evenity and Prolia and the Evenity website suggests Prolia afterward. I wonder why some docs are just following that suggestion!

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@willow10

things got very complicated at the first of the year when my provider left the practice, and I was switched to an Endocrinologist. She suggested I go on Prolia after Evenity and just stay on it with no breaks, as she doesn't recommend the infusions like Reclast as follow-ups. Her patients that have been on Prolia have had no issues after several years on it. I was not convinced that was the best plan for me, and since the provider change, my insurance will not allow me to get another DEXA scan until December 2023. I'm just going to continue to live my life, take lots of Vitamin D and exercise until then. I wish I could see what improvement the Evenity did, but can't afford to pay for a scan myself.
Just as an aside, my Vitamin D was VERY low when they tested for it, so I've been on large daily doses (5000 a day) for the last 9 months and my last blood test showed that my levels were right in the middle of the preferred range now.
The Endocrinologist said that in her experience, a severe lack of Vitamin D can really affect the DEXA scan reading and that though my numbers showed I had severe Osteoporosis, she agreed that I should have enough improvement through the Evenity and the increased levels of Vitamin D that waiting until later this year to make further decisions is a fairly reasonable course of action.
I'm 69, fairly active, have good balance and haven't broken any bones that weren't traumatic (kicked by a horse many years ago). It's a gamble, but it is mine to take and I just didn't want to commit to years of Prolia until i feel that I really have no choice.

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I understand. I'm thinking the same way after evenity. Maybe by then there will be something else coz I won't take prolia or Fosamax. Start my shots hopefully in March. Good luck and thanks for replying.

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@windyshores

@willow10 my doc at a top hospital says the opposite: he will not prescribe Prolia because of the bone loss when stopped. Instead after Tymlos he wants me to do Reclast but will first infuse 1/4 dose to see how I do. He says that after an infusion of Reclast I might be able to take a med break. Not possible with Prolia.

Amgen makes both Evenity and Prolia and the Evenity website suggests Prolia afterward. I wonder why some docs are just following that suggestion!

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My previous provider and I had decided that I'd take a year of Prolia, then switch to Reclast and take it a year at a time after, with hopefully some med breaks in the future. It was a plan I could live with. Sure wish she hadn't left! Anyway, new Endocrinologist has her ideas of what works for her patients but I wasn't on board with her recommendation, so as we agreed, we'll see where I am in early January when my next appointment is.
I did read a study that showed that the results of a year of Evenity and then a year of Prolia does show excellent bone growth, but I'm not ready to commit to being on Prolia forever.

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@cat714

I understand. I'm thinking the same way after evenity. Maybe by then there will be something else coz I won't take prolia or Fosamax. Start my shots hopefully in March. Good luck and thanks for replying.

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Good luck with your shots. I did have some joint soreness for a few days after each of them, but no headaches or anything that a couple of ibuprofen couldn't handle.

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@willow10

Good luck with your shots. I did have some joint soreness for a few days after each of them, but no headaches or anything that a couple of ibuprofen couldn't handle.

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That's good to know. Hoping the same for me.

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@candy209

You sound like you are about where I am with bone density. I am 64 and active and scared of the evenity but told that would be the best for me. I am dealing with a dental issue and will start after that. Please let me know how you do with the your treatment.
All the best wishes for a healthy and happy year with big improvements in your bone health.
Candy

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Candy209 Thank you so much for reading my post and for your kind wishes! Sorry your bone density issue is similar to mine, it doesn't get better, unfortunately. I waited way too long to do something, and I too was very afraid to take Evenity. I spoke to my cardiologist and he assured me it would be okay for my heart situation. Would seeing a cardiologist help you?
I wish you all the best with your decision and I will let you know how I'm doing with my treatment. Take care and try to do balance exercises to help keep you from falling. Margret Martin is very helpful.
Kolika

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Hello dear Kolika,
Thank you for the quick response.
I have been Adrain’s to take the nine drugs as well and didn’t think this could happen. I don’t know why I didn’t realize the longer I wait the worse they get. I just had some cardio testing done last week and should be good to go. I am very sensitive to drugs so I hope I do well with the evenity.
Please do keep me up to date on how things are going and I will do the same.
All the best to you and let’s both think visitors thought that all will be well.
I’ll start the balance exercising right away.
Candy

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