Evenity and side effects: What helps joint and muscle pain?

Posted by rjkesal123 @rjkesal123, Feb 13 12:40pm

Hi All,
I received my first Evenity injection two weeks ago. Everything was going well, did not even have injection site pain. But the last couple of days I have had joint and muscle pain especially in my neck and upper back, Lower back and arms. I've read the drug peaks around 7 to 14 days. I am wondering if this is normal, has anyone else experienced this and if these side effects subside? Is there anything you take before or after the injection to relieve this pain? It is very uncomfortable. Thank you!

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I have completed my seventh month of Evenity. I usually have a light headache along with some joint pain. I would like to ask if anyone has experienced bloating as well as constipation?
This is happening to me and I try to be very conscientious since I had colon surgery a few months ago and I’m also a liver transplant recipient. After colon resection I was doing fine. After I restarted evenity in January (had to pause due to dental extraction) it seems I have more issue with bloating and constipation.
I am determined to finish my treatment!
Wishing all of you the best !

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@hopefullibrarian

I'm fortunate that, so far, the side effects haven't been all that bad. For me the benefits are worth the minor discomforts and exhaustion. Not everyone is so lucky. For anyone who may be having more serious side effects, it's worth having your BTMs checked to help you decide if what you're going through is worth it.
Even though I'm feeling pretty good overall, if my BTMs indicated that Evenity wasn't doing much, I'd stop the treatment, and would spend the time and money on an alternative.
I had a CTx and P1NP done exactly 2 weeks after my 3rd Evenity injection, and I'm very pleased with the results, so I'll continue the treatment, and get the same tests again in another 3 months.
For anyone curious about the results I'll share them here along with Dr McCormick's reference ranges.
CTx = 355 (reference range 100-375)
P1NP = 102 (reference range 30-50)

Note: I fasted before the tests, had them done at 7:30 in the morning, and stopped taking collagen more than 48 hours beforehand. I don't take biotin supplements.

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Hi @hopefullibrarian do you happen to have baseline bone turnover markers tested? If you do, do you mind sharing your baseline results? Thanks a lot!

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Hi mayblin,
When I was first diagnosed in January 2023, I didn't even know there was such a thing as BTMs. That May I had my one and only injection of Prolia. It wasn't until early January of this year, just before I started Evenity injections, that I had my first BTMs done. I don't know if those tests can be considered a true baseline. They're at least something to use for comparison.
Here are those results along with the those from this month for 'side-by-side' comparison:

January 10, 2024
CTx = 115
P1NP = 11

April 11, 2024
CTx = 355
P1NP = 102

Note: I was fasting, did not take collagen for 48 hours, and was not taking biotin supplements. However, the blood was drawn at 11:30 am which is much later than my tests this month. The way I understand it, the CTx is highest at around 3 am, and goes down from there throughout the day. If that's true, then the two CTx scores are not good for comparative purposes. The dramatic change in P1NP for the better is what I'm focusing on.

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@hopefullibrarian

Hi mayblin,
When I was first diagnosed in January 2023, I didn't even know there was such a thing as BTMs. That May I had my one and only injection of Prolia. It wasn't until early January of this year, just before I started Evenity injections, that I had my first BTMs done. I don't know if those tests can be considered a true baseline. They're at least something to use for comparison.
Here are those results along with the those from this month for 'side-by-side' comparison:

January 10, 2024
CTx = 115
P1NP = 11

April 11, 2024
CTx = 355
P1NP = 102

Note: I was fasting, did not take collagen for 48 hours, and was not taking biotin supplements. However, the blood was drawn at 11:30 am which is much later than my tests this month. The way I understand it, the CTx is highest at around 3 am, and goes down from there throughout the day. If that's true, then the two CTx scores are not good for comparative purposes. The dramatic change in P1NP for the better is what I'm focusing on.

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Thank you @hopefullibrarian for sharing your treatment details! You and your doc made a great call to stop prolia after just one shot and transition to evenity is a great one. You are absolutely right about your bone markers that P1NP is the one to focus here, which showed such a tremendous anabolic response! Although the CTX reading prior to evenity may not be accurate, the reading on 4/11/24 is just wonderful because the number indicated there wasn’t any dramatic effect from prolia withdrawal. Looking at bone markers, things are working out perfectly 😀. Thank you so much for this rare set of bone marker readings, which showed how they change during a transition from prolia to evenity. You and your doc must be thrilled!

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Mayblin, do you have (m)any doubts about the use of bone markers? or their use in some.

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@gently

Mayblin, do you have (m)any doubts about the use of bone markers? or their use in some.

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It’s funny you ask, @gently. When I got my very first result of bone turnover marker back, which showed P1NP 400 at 13 mo of forteo, I had my doubts already. Looking at the reference range of 20-108mcg/L for 46-60yo female, my raw reaction at that moment is what the _!? Dr. Internet doesn’t help either: severe liver disease, even malignancy could be the culprit. When the rational mind took over, I realized that I had a huge anabolic response to forteo! Bone turnover markers offer more than a glimpse to bone formation vs resorption than we thought. The dynamics of two markers are in tandem. Although the markers are still not prefect in predicting or directing clinical decisions in all patients’ cases, I personally have more confidence in them and my serial tests since then showed. Instead blindly ‘walking’ towards the target, i.e., end of therapy or the annual/biannual Dexa scan, I definitely would like to see how those markers changes during therapy, especially during anabolic therapy, for future reference should repeated anabolic treatment occur.

Many factors affect bone markers results, as discussed in this thread:

https://connect.mayoclinic.org/comment/1052882/

Besides the factors mentioned above, doubts for bone turnover markers could also stem from many other reasons. The assays themselves have storage requirements. Sensitivities among different assays differ also so we’d want to stick with one lab. People who have severe liver diseases, end stage kidney diseases and some particular malignancies, etc. could throw results off, either up or down. I’m sure researchers on the front line are working on those issues. We as patients shouldn’t be easily backed off just by the non-believers. Science advances faster if we all be part of the process.

Are you a doubter or a believer, @ gently?

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@mayblin

It’s funny you ask, @gently. When I got my very first result of bone turnover marker back, which showed P1NP 400 at 13 mo of forteo, I had my doubts already. Looking at the reference range of 20-108mcg/L for 46-60yo female, my raw reaction at that moment is what the _!? Dr. Internet doesn’t help either: severe liver disease, even malignancy could be the culprit. When the rational mind took over, I realized that I had a huge anabolic response to forteo! Bone turnover markers offer more than a glimpse to bone formation vs resorption than we thought. The dynamics of two markers are in tandem. Although the markers are still not prefect in predicting or directing clinical decisions in all patients’ cases, I personally have more confidence in them and my serial tests since then showed. Instead blindly ‘walking’ towards the target, i.e., end of therapy or the annual/biannual Dexa scan, I definitely would like to see how those markers changes during therapy, especially during anabolic therapy, for future reference should repeated anabolic treatment occur.

Many factors affect bone markers results, as discussed in this thread:

https://connect.mayoclinic.org/comment/1052882/

Besides the factors mentioned above, doubts for bone turnover markers could also stem from many other reasons. The assays themselves have storage requirements. Sensitivities among different assays differ also so we’d want to stick with one lab. People who have severe liver diseases, end stage kidney diseases and some particular malignancies, etc. could throw results off, either up or down. I’m sure researchers on the front line are working on those issues. We as patients shouldn’t be easily backed off just by the non-believers. Science advances faster if we all be part of the process.

Are you a doubter or a believer, @ gently?

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Both

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Did Medicare pay for the P1NP test? My doctor wouldn’t order it because she said Medicare won’t pay for it

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I’ve gained several pounds since going on Evenity. I guess the increased appetite that you mentioned is the reason. Wondering if anyone has experienced brain fog and or depression with Evenity?

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@ritabtripp

Did Medicare pay for the P1NP test? My doctor wouldn’t order it because she said Medicare won’t pay for it

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ritabtripp, Medicare pays for mine. Are you on original Medicare?

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