No response to 12 months of Evenity?

Posted by evelyngrace @evelyngrace, 5 days ago

I just completed 12 months of Evenity and my DXA scan shows no change at all, no gains in bone density. This is the first osteoporosis drug I’ve ever taken, my vit D and calcium levels were normal throughout treatment. Has anyone else had no response to Evenity? Could your doctor explain why? What steps did you take next?

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I understand your frustration - my doctor wants me to take Evenity I was given a bone holiday from bisphosohonates 11/25 (after 3years on them) he based that holiday on a good DEXA 15 months earlier 3/24 - big mistake as my osteoporosis went back to worse than in 2022 and I’m researching and getting blood tests they won’t do because insurance and hospital protocol won’t cover them - like you I don’t accept ‘they quit working’ -or in your case ‘didn’t work’ if insurance companies would pay for bloodwork (PN1P and CTX) that shows bone markers I wouldn’t be where I am - sadly it will be months before I can see another endo at a research university. Until then I get all my calcium, vitamin D and protein through food and do resistance training with a Liftmore certified PT. I hope when you get some answers you will let us all know.

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Profile picture for sherkush @sherkush

I understand your frustration - my doctor wants me to take Evenity I was given a bone holiday from bisphosohonates 11/25 (after 3years on them) he based that holiday on a good DEXA 15 months earlier 3/24 - big mistake as my osteoporosis went back to worse than in 2022 and I’m researching and getting blood tests they won’t do because insurance and hospital protocol won’t cover them - like you I don’t accept ‘they quit working’ -or in your case ‘didn’t work’ if insurance companies would pay for bloodwork (PN1P and CTX) that shows bone markers I wouldn’t be where I am - sadly it will be months before I can see another endo at a research university. Until then I get all my calcium, vitamin D and protein through food and do resistance training with a Liftmore certified PT. I hope when you get some answers you will let us all know.

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@sherkush My understanding is that your having been on bisphosphonates can blunt your response to Evenity which will be a factor for you. Evenity was the first osteoporosis medication I had ever taken. I'm not optimistic about finding out why I did not respond to Evenity as it appears to be a highly atypical finding. I am not having any luck connecting with others who have had the same non response and the doctors aren't motivated to figure it out rather they just want to move forward and try something else. It's extremely frustrating as you know.

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Profile picture for evelyngrace @evelyngrace

@wilweten I did have a lot of testing done before starting Evenity. Is there any specific test that you’re interested in? All tests I had were normal. I’ve had sub clinical hyperthyroid for decades which we decided to treat after the seventh injection of Evenity as the TSH dipped into the hyperthyroid range (after being Subclinical for years). My serum calcium and serum magnesium were normal. I don’t how you are measuring cal/mag ratio. My endocrinologist says the PTH is the most accurate measurement of what’s going on with calcium in your body. Nothing I’d like more than to figure out why I had no response but the doctor can’t explain it. This drug has only been available since 2019 so there’s not a lot of data on no responders.

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@evelyngrace Were you tested for celiac disease (you don't need to have symptomps to actually suffer from it?)

From the start to the end of your course did they check every 3-6 months P1NP to CTx ratio. That would give an idea about how much absorption and how much building of bone is taking place.

Serum calcium doesn't say much, as when you body needs more than available from food, it simply draws it from your bones. A 24 hour urine test is supposed to give more reliable results.

Calcium and magnesium compete for the same place in the gut. You need both to get calcium into the bones. Too little or two much of one of them (it doesn't seem to matter which one) would lead to a suboptimal result.
As to the calcium / magnesium ratio, the rule of thumb is 2:1, but as menopauzal patients with osteoporosis are supposed to use 1200 mg of calcium per day, it's not suitable to use that rule, as it would result in an unhealthy high amount of magnesium. However, how much it should be in our case, is not clear too me. I saw some research on this, but I found it too complex.
I just got my diagnosis a few months ago and still need to learn a lot about what could actually help me.

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Profile picture for WilWeten @wilweten

@evelyngrace Were you tested for celiac disease (you don't need to have symptomps to actually suffer from it?)

From the start to the end of your course did they check every 3-6 months P1NP to CTx ratio. That would give an idea about how much absorption and how much building of bone is taking place.

Serum calcium doesn't say much, as when you body needs more than available from food, it simply draws it from your bones. A 24 hour urine test is supposed to give more reliable results.

Calcium and magnesium compete for the same place in the gut. You need both to get calcium into the bones. Too little or two much of one of them (it doesn't seem to matter which one) would lead to a suboptimal result.
As to the calcium / magnesium ratio, the rule of thumb is 2:1, but as menopauzal patients with osteoporosis are supposed to use 1200 mg of calcium per day, it's not suitable to use that rule, as it would result in an unhealthy high amount of magnesium. However, how much it should be in our case, is not clear too me. I saw some research on this, but I found it too complex.
I just got my diagnosis a few months ago and still need to learn a lot about what could actually help me.

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@wilweten I had 24 hr calcium (normal) but no P1NP. Both drs did not use them. Neither talked about cal/mag ratio either. Both of those levels were measured and normal. PTH checked and normal. Injectable medications like Evenity do not pass through the gut like oral meds do and therefore absorption is not a factor. Celiac was not checked but could be a factor in absorption of food or meds going through gut. I wish you well in your osteoporosis journey.

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What were your T-scores prior to treatment to Evenity? Why did your doctor recommend Evenity first? Treating osteoporosis in the absence of a fracture with Evenity as the first medication is unusual. Not that it’s bad, it’s just that most insurance companies will push for a bisphosphonate first when the initial osteoporosis diagnosis is made.

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Profile picture for oopsiedaisy @oopsiedaisy

What were your T-scores prior to treatment to Evenity? Why did your doctor recommend Evenity first? Treating osteoporosis in the absence of a fracture with Evenity as the first medication is unusual. Not that it’s bad, it’s just that most insurance companies will push for a bisphosphonate first when the initial osteoporosis diagnosis is made.

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@oopsiedaisy why do you assume I didn’t have a fracture or want to know my T scores? I’m searching for information on poor responses to Evenity. Most respond very well to it so my result is atypical. I mentioned that this is the first OP drug I’ve taken because prior use of bisphosphonates blunts the response to Evenity and so that is immediately ruled out in my case.

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I like divinity better than anything else I gained from -3.1 to -2.5 but my primary care doctor said the actual rules for doing a bone density is two years after the treatment. So hang in there you may have gained some no matter what it says now just keep walking and doing what you’re supposed to do as far as weight-bearing and lifting and things like that.

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Profile picture for penny57 @penny57

I like divinity better than anything else I gained from -3.1 to -2.5 but my primary care doctor said the actual rules for doing a bone density is two years after the treatment. So hang in there you may have gained some no matter what it says now just keep walking and doing what you’re supposed to do as far as weight-bearing and lifting and things like that.

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@penny57 that’s great that you responded so well! My dr says the hip is slower to respond so I may see improvement there on next year’s DXA. Thanks for the encouragement!!

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Profile picture for evelyngrace @evelyngrace

@penny57 that’s great that you responded so well! My dr says the hip is slower to respond so I may see improvement there on next year’s DXA. Thanks for the encouragement!!

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@evelyngrace keep going we can do this!!!!!

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