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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@bobbo1

-3.5, and vertebral compression fractures. Sure, I looked at side effects, and the one that worries me most is jaw osteonecrosis, but that's also true of all bisphosphonates and Prolia. Only Forteo and Tymlos (and estrogen) avoid that specific side effect.

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Research will confirm that is a RARE occurrence

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@contentandwell

@arlene7 Most doctors do prefer for you to get your calcium through foods. There is no way I do that though, I am lactose intolerant. I realize there is calcium in some vegetables but I would not get the 1200 mg a day suggested.
JK

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Whole sesame tahini and firm tofu have high quantities of calcium

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@marcd

Whole sesame tahini and firm tofu have high quantities of calcium

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@marcd I haven't ever had whole sesame tahini but I have tried tofu and I simply cannot eat it. I am doing pretty well now though. Oddly, my lactose intolerance went away as quickly as it developed! I now drink Fairlife Skim Milk which has a higher than typical calcium and protein amount. Coincidently, Fairlife does not have lactose in it, which is probably how I came across it. It doesn't mention having added calcium so I think maybe they have another process to get it to have more calcium. I use the skim milk and it doesn't look like typical skim milk with that sort of translucent look. It looks and tastes more like 2%. I use that in my morning oatmeal, plus I have cheese sometimes later, and maybe a glass of milk at some point during the day. It's very infrequent that I get to the end of the day and need a calcium supplement.
When I do need to get a little more calcium I take one Citrical petite which has 400mg of calcium.
JK

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I had my second month of shots of Evenity. The first nurse administered the doses in the muscle, and this dose was administered in the back of my arms. I had pain and swelling with red areas for three days. Is this a normal reaction? It was very uncomfortable.

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@judith73

I had my second month of shots of Evenity. The first nurse administered the doses in the muscle, and this dose was administered in the back of my arms. I had pain and swelling with red areas for three days. Is this a normal reaction? It was very uncomfortable.

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Yes, it is normal. I have had 5 shots. Some months it is more red and more painful than others. But I always have some swelling, some discomfort after.

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@elisabethv

Yes, it is normal. I have had 5 shots. Some months it is more red and more painful than others. But I always have some swelling, some discomfort after.

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Thanks for reassuring me! I so want this to work!!

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My endocrinologist has recommended Evenity to me. How is everyone feeling on it after a few months/injections? I'm feeling nervous and would love to hear feedback from those who have been taking it. Thanks so much!

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@contentandwell

@arlene7 Most doctors do prefer for you to get your calcium through foods. There is no way I do that though, I am lactose intolerant. I realize there is calcium in some vegetables but I would not get the 1200 mg a day suggested.
JK

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JK, I can't delete my comment here but I will edit it. I was wondering if you have you tried lactose free milk? After I posted I saw that indeed you have. So, this is for others who may be lactose intolerant.

I have not been diagnosed as lactose intolerant but I know I do a lot better with lactose free milk. It is real milk and tastes like real milk except it is a tiny bit sweeter tasting. My doc is putting me on 600 mg of daily calcium although my calcium level is not low at this time. She says Evenity can cause it to drop.

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@charleneb

JK, I can't delete my comment here but I will edit it. I was wondering if you have you tried lactose free milk? After I posted I saw that indeed you have. So, this is for others who may be lactose intolerant.

I have not been diagnosed as lactose intolerant but I know I do a lot better with lactose free milk. It is real milk and tastes like real milk except it is a tiny bit sweeter tasting. My doc is putting me on 600 mg of daily calcium although my calcium level is not low at this time. She says Evenity can cause it to drop.

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@charleneb Since my post mentioning that I am lactose intolerant, my lactose intolerance has disappeared! It was triggered by my immunosuppressants and now is gone. One day I ate something without remembering to take a Digestive Advantage pill (they helped if I didn't have too much lactose) and I had no reaction to the lactose in what I had eaten so I tried adding more and more and more and no reaction! In the process though I discovered Fairlife Milk. It is lactose-free and their skim milk is ultra filtered causing it to be richer tasting than regular skim milk. I don't like regular skim milk but this is more like 2%. Plus, it has more calcium and protein than regular milk, due to the filtration. I highly recommend it.
JK

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@contentandwell

@charleneb Since my post mentioning that I am lactose intolerant, my lactose intolerance has disappeared! It was triggered by my immunosuppressants and now is gone. One day I ate something without remembering to take a Digestive Advantage pill (they helped if I didn't have too much lactose) and I had no reaction to the lactose in what I had eaten so I tried adding more and more and more and no reaction! In the process though I discovered Fairlife Milk. It is lactose-free and their skim milk is ultra filtered causing it to be richer tasting than regular skim milk. I don't like regular skim milk but this is more like 2%. Plus, it has more calcium and protein than regular milk, due to the filtration. I highly recommend it.
JK

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I usually buy lactose free with 1% fat. I agree it tastes richer than regular 1%. I recommend it for other reasons too. While it is usually close to double the price of regular milk, it last so much longer in the frig. I buy it at least a month ahead and it saves trips to the store so long as it isn't opened. Really nice in the winter.

Just a reminder to others considering it: Because it has no lactose it does NOT make great pudding unless you want pudding you can drink. I tried making tapioca repeatedly with it and would have to overcook it to get it to thicken. I finally read about how it won't thicken. I use regular milk for it now and after heating it I don't seem to have a problem. I also keep low fat dry milk packets in the house so I can make pudding without going to the store.

I have had other health issues in addition to osteoporosis over the past years and being able to have plenty of reasonably healthy food in the house is a very good feeling.

Char

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