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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@tortuenomade913

Hi Penny,

See if you can find Ripple milk…it is made out of peas and has even more calcium than Almond milk. Just a suggestion.

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Hi tortuenomade913
I have not heard of Rippl milk but will definitely check into it. Thank you for the suggestion.

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@lpenny

Hi tortuenomade913
I have not heard of Rippl milk but will definitely check into it. Thank you for the suggestion.

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All of these milks have calcium added. Ripple has tricalcium phosphate. How is the calcium in various nut and pea and soy milks any different from taking a supplement? I am genuinely curious. Ditto oj!

I have a dairy allergy so this question is very relevant to me. I take a supplement in the form of a pill, and sometimes Tums.

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@paala

Hello
I have completed 6 months of Evenity. Yes, I have had side effects beginning after my second month. Fatigue, some insomnia, joint aches, decrease appetite. I have continued exercising and walking 3+ miles a day. The medication decision is hard. We are all caught between a rock (the osteoporosis will not improve doing nothing) and hard place (starting medication). All we can do is make the best decision possible at the moment. I pray you make a decision soon.

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What will you take after Evenity?

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@dmanduca

What will you take after Evenity?

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My doctor has scheduled me for Reclast after I finish Evenity treatments.

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Starting Evenity at the end of February and very concerned about the side effects. Have already fallen once and broke my femur and have scoliosis. I am also concerned about the costs. Any suggestions about handling side effects? My insurance is only going to cover 80% of the $2000+ costs

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@windyshores

All of these milks have calcium added. Ripple has tricalcium phosphate. How is the calcium in various nut and pea and soy milks any different from taking a supplement? I am genuinely curious. Ditto oj!

I have a dairy allergy so this question is very relevant to me. I take a supplement in the form of a pill, and sometimes Tums.

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You are right that fortified foods are the same as taking a supplement. But I guess for those that can't have dairy, it kills two birds with one stone. I don't consume diary but don't use fortified products as I'd rather take a good quality supplement if I need to. Tums contains calcium carbonate which is not as absorbable as calcium citrate, malate or MCHC. Calcium carbonate is the least expensive option so that may be a consideration and it must be taken with food to aid in absorption where the others can be taken on their own. Cabonate is also the most constipating form if that is an issue for some so lots of things to consider in where we get our calcium from.
An interesting tidbit...eggshells are almost completely calcium carbonate and are edible if you cook them. After cooking (lots of info online about how to do this and it's really easy!), you grind them into a powder and add to food. A small amount packs a really big punch of calcium so if consuming, you should only take a tiny amount at a time, certainly not the whole shell at once as it would be too much. Easiest way is consume is in applesauce or soup. I'm not sure if the carbonate in eggshells is as constipating as it is from supplement sources but I would think not. It is likely more absorbable than a carbonate supplement as it has other supportive nutrients vs. a calcium carbonate supplement which is generally produced from rock. There are now supplements on the market made from eggshell but if you eat eggs at home, it's a simple process to make your own and then your calcium supp is free! A friend of mine had chickens and they were laying eggs that had soft breakable shells. She then took those shells, cooked and ground them and added them into their food and pretty soon, they were producing eggs with nice sturdy shells as they were getting the calcium they needed.
I know, I know, this is likely too much information but I get excited by the various options that are out there!

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as a follow up to my last post, I thought I would post this paper summarizing some studies on the use of eggshell powder.
https://pubmed.ncbi.nlm.nih.gov/15018022/

The significant takeaways:
"Clinical studies in postmenopausal women and women with senile osteoporosis showed that eggshell powder reduces pain and osteoresorption and increases mobility and bone density or arrests its loss. The bioavailability of calcium from this source, as tested in piglets, was similar or better than that of food grade purified calcium carbonate. Clinical and experimental studies showed that eggshell powder has positive effects on bone and cartilage and that it is suitable in the prevention and treatment of osteoporosis."

So, almost seems to good to be true, especially that last line. But with all that said, seems like a good option to include in our regimens with the hopes that it can have some positive effect.

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@malkahsheva

Starting Evenity at the end of February and very concerned about the side effects. Have already fallen once and broke my femur and have scoliosis. I am also concerned about the costs. Any suggestions about handling side effects? My insurance is only going to cover 80% of the $2000+ costs

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I am scheduled for my first set of injections in 2 days. I also am concerned about the side effects but at this point I have no other options available to me. There is a co-payment program that should only cost you $25.00 a month. Your MD should set you up for that, mine did. I also have to pay $85.00 each month for the office to actual give me the medicine. If you have any questions regarding the co-payment program I can provide you with the information. Good luck to you with your Evenity journey, please keep all of us updated.

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@pedsnurse61

I am scheduled for my first set of injections in 2 days. I also am concerned about the side effects but at this point I have no other options available to me. There is a co-payment program that should only cost you $25.00 a month. Your MD should set you up for that, mine did. I also have to pay $85.00 each month for the office to actual give me the medicine. If you have any questions regarding the co-payment program I can provide you with the information. Good luck to you with your Evenity journey, please keep all of us updated.

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Thank you for your reply. Please let me know about the co-payment program. Evidently my doctor doesn't know about it. I asked her about 3 weeks ago, and she said she would look into it and never did. I start my first shot on Feb 27. Please keep in touch and let me know how it is going for you as well. Looks as if we are both starting the same journey.

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@teb

as a follow up to my last post, I thought I would post this paper summarizing some studies on the use of eggshell powder.
https://pubmed.ncbi.nlm.nih.gov/15018022/

The significant takeaways:
"Clinical studies in postmenopausal women and women with senile osteoporosis showed that eggshell powder reduces pain and osteoresorption and increases mobility and bone density or arrests its loss. The bioavailability of calcium from this source, as tested in piglets, was similar or better than that of food grade purified calcium carbonate. Clinical and experimental studies showed that eggshell powder has positive effects on bone and cartilage and that it is suitable in the prevention and treatment of osteoporosis."

So, almost seems to good to be true, especially that last line. But with all that said, seems like a good option to include in our regimens with the hopes that it can have some positive effect.

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Any idea where you could obtain eggshell powder? I am lactose intolerant so milk is definitely not an option for me.
Thanks to everyone in this group. Hearing all your voices has given me more confidence in this journey.

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