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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@windyshores

I had burning and tingling on Evenity but my calcium tested fine!

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How nice it would be if there were always a simple and clear connection where one thing leads directly to another every time (ie low blood calcium=arthralgia). There are just too many factors (medications, genetics, lifestyle, comorbitities, etc) that can cause issues.
I have a pretty high tolerance for pain, but this was pretty bad. If it happens again, and it's possible to identify a direct cause and fix it, I'll be beyond happy. Evenity is otherwise working well for me, so I'd hate to have to stop the treatment.

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@hopefullibrarian

After my first set of Evenity injections in January, I started posting monthly about the side-effects I had experienced. They've been so minor that I stopped commenting after the third. I had exhaustion that started about a week after that one, then everything returned to normal.

Because people are more likely to share negative experiences than positive ones, I feel like it could be reassuring to continue my updates even when everything's going well. I'll bring things up-to-date.

My fourth set of injections was in April. The technique that the nurse used was different. She injected slowly. It was more painful than I experienced with the previous three, and that day the injection sites were very tender. I even had a burning sensation under the skin. It was more annoying than it was painful. I was trying to do focused work and it was distracting me.

I had my fifth set done by a different nurse last week. She's a no-nonsense, just get it done kind of person, so she did it fast. Afterward there wasn't much tenderness, and no burning at all though one injection site bruised.

An interesting thing that may, or may not be related, is a new occasional tingling nerve sensation (not really painful) in my ankles. Has anyone else had that anywhere on their body?

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Yes! I have had two sets of injections and after my last one I started getting random tingly feelings in my lower jaw and around my ear. I know my provider will say it’s not related because she already told me that Evinity has no side effects (such as muscle pain, exhaustion, or neck. Anyone else had these electric sensations?

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Tingling and "paresthesias" as well as joint pain are listed side effects for Evenity. I don't know why doctors don't read side effect lists. They are online, on the actual drug site.

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@eugenia689

Yes! I have had two sets of injections and after my last one I started getting random tingly feelings in my lower jaw and around my ear. I know my provider will say it’s not related because she already told me that Evinity has no side effects (such as muscle pain, exhaustion, or neck. Anyone else had these electric sensations?

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After my third dose 6days ago I am currently experiencing quite painful right jaw pain. Altho my tmj has only clicked I have not had such pain occur ever before. Tylenol takes edge off but not away. I may have to seek further medical help.Makes me think this is another side effect. I continue to be very tired out and have more joint aches than usual and brain fog that continues. I still not sure if this drug is for me. Any comments are appreciated. Yes i have had tingling feelings that come and go, and a few night sweat nights which I have not had since menopause days.

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"ONJ associated with use of drugs such as bisphosphonates, denosumab, or romosozumab is referred to as “medication-related ONJ” or MRONJ.Apr 11, 2023" accordind to the American Dental Association.
It is rare! But with jaw pain more intense than ever before you might consider ( with your doctor) discontinuing Evenity. With the third injection you have received the best of the drug since the next 9 months would be antiresorptive. Paul Miller suggests that administering Evenity for three months might be a better option, since it was unknown at the time of approval that the next nine would be antiresporptive.
I would be wise to inform your prescribing physician (at the risk of being reassured that it could't be MRONJ), so you can begin considering what you might transition to.
There is currently no method of diagnosing ONJ. It begins with swelling and pain.
It could just be the joint pain that many experience with Evenity. I hope it goes away.

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@eugenia689

Yes! I have had two sets of injections and after my last one I started getting random tingly feelings in my lower jaw and around my ear. I know my provider will say it’s not related because she already told me that Evinity has no side effects (such as muscle pain, exhaustion, or neck. Anyone else had these electric sensations?

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Eugenia689,
Yes! From the first injection, tingling in my upper arms and scalp toward the base of my head. Eventually, it morphed into finger joint pain and fingertip pain as if I was developing neuropathy. I stopped at month 6 because it also spiked my blood pressure starting 3 to 4 days after injection. I had brain fog and fatigue that did not dissipate after two weeks. Evenity gradually builds in your system. I decided to discontinue. I'm happy for those who have had success with it, but it did not work for me. Best wishes for finding what works for you.

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@gently

"ONJ associated with use of drugs such as bisphosphonates, denosumab, or romosozumab is referred to as “medication-related ONJ” or MRONJ.Apr 11, 2023" accordind to the American Dental Association.
It is rare! But with jaw pain more intense than ever before you might consider ( with your doctor) discontinuing Evenity. With the third injection you have received the best of the drug since the next 9 months would be antiresorptive. Paul Miller suggests that administering Evenity for three months might be a better option, since it was unknown at the time of approval that the next nine would be antiresporptive.
I would be wise to inform your prescribing physician (at the risk of being reassured that it could't be MRONJ), so you can begin considering what you might transition to.
There is currently no method of diagnosing ONJ. It begins with swelling and pain.
It could just be the joint pain that many experience with Evenity. I hope it goes away.

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Thanks for your reply. I thought things were resolving but I was wrong about the painful left jaw problem. I will let my doc know what is happening. Also I was not aware of the information about the anti reabsorptive facts that you mentioned that happens after three months of evenity. So why is the treatment prescribed to do for a year I wonder? 🤔

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mmcbritef,
it is thought to be less common with Evenity than with bisphosphonates or Prolia.
TMJ could be a contributing factor. There are warnings about any oral hardware that can rub. But really, if it is ONJ you've caught it early before any obvious lesions. Mostly I hope it is just the general joint pain that will go away.

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@hopefullibrarian

After my first set of Evenity injections in January, I started posting monthly about the side-effects I had experienced. They've been so minor that I stopped commenting after the third. I had exhaustion that started about a week after that one, then everything returned to normal.

Because people are more likely to share negative experiences than positive ones, I feel like it could be reassuring to continue my updates even when everything's going well. I'll bring things up-to-date.

My fourth set of injections was in April. The technique that the nurse used was different. She injected slowly. It was more painful than I experienced with the previous three, and that day the injection sites were very tender. I even had a burning sensation under the skin. It was more annoying than it was painful. I was trying to do focused work and it was distracting me.

I had my fifth set done by a different nurse last week. She's a no-nonsense, just get it done kind of person, so she did it fast. Afterward there wasn't much tenderness, and no burning at all though one injection site bruised.

An interesting thing that may, or may not be related, is a new occasional tingling nerve sensation (not really painful) in my ankles. Has anyone else had that anywhere on their body?

Jump to this post

Halfway through the treatment!!! Nearly two weeks ago, I had my sixth set of injections, and they were the easiest yet. There was only a tiny bit of tenderness afterward. A different nurse gave them to me, so maybe that was because of her technique. I'm feeling great.
On Tuesday, I get my BTMs tested again. It will be interesting to compare them to what they were three months ago.

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@gently

hopefullibrarian, quite helpful and thoughtful.
Because low blood calcium can cause tingling and pain in the hands or feet, Because Evenity can cause low blood calcium, you might want serum labs. Easier still to add calcium. I'd want to know, (and would have a foot x-ray) but would probably want to get rid of the pain right away. I hope it is just calcium.
"Evenity may also cause muscle spasms, neck pain, and burning or tingling (usually in the hands and feet)." https://www.healthline.com/health/drugs/evenity-side-effects--not my favorite source.

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My endo did some troubleshooting. It looks like it was excessively high serum B12 that caused the problem. After stopping my B12 supplements, the tingling quickly went away, and there hasn't been anymore pain. As @windyshores pointed out, excess B12 gets flushed out in the urine, so once I stopped taking it it was cleared out of my bloodstream pretty quickly.
Of course, I can't 100% sure, but it seems pretty unlikely that my tingling and pain were a side effect of Evenity.

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