1. < Osteoporosis & Bone Health

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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kwteacher | @kwteacher | Apr 25 8:29pm

Has anyone experienced nausea on Evenity?

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1 reply
gently | @gently | Apr 26 5:14am
In reply to @mayblin "Hi @gently under what circumstances will osteocalcin be used? It seems CTX and P1NP are commonly..." + (show)
@mayblin

Hi @gently under what circumstances will osteocalcin be used? It seems CTX and P1NP are commonly used nowadays for gauge of osteoclasts’ and osteoblasts’ activities. Thanks!

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mayblin, in my circumstance osteocalcin was ordered because endodoc wasn't impressed with the P1NP after six months of Forteo and wanted a double check.
I'd read that individuals with thyroid issues (I'm subclinical with high TPO) might be better served by osteocalcin testing. but that article was 1998 or 2005.
I could just write "I don't know," One painful sentence.

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janflute | @janflute | Apr 26 5:52am
In reply to @frogwhizzer "I have been on a multitude of meds. Prolia for several years onto Reclast! I had..." + (show)
@frogwhizzer

I have been on a multitude of meds. Prolia for several years onto Reclast! I had such a reaction to that I said never again! The pain was beyond mind blowing. Off the charts within days. I was then put on Evenity a year later. I was on that for 8 months. At every injection the swelling at injection sites looked almost like the beginning of cellulitis. I would not pack it for relief…making it to this past January.
I was having body pain, muscle spasms, numbness, and my shoulders were killing me. The did a MRI and it showed a torn rotor cuff. I’ve had no recent injuries of either joint. It came on spontaneously.
I am so DONE with these meds. I feel like being on these meds has poisoned my body. I’m a Guinea pig!
I pray I am making the right decision but I’m done with them all! Ironically… I did get into see a rheumatologist and my ANA is very high but nothing definitive for known autoimmune diagnoses. All I know is I have muscle spasms all the time, worse at night, my shoulders hurt and I’ve been in PT for weeks.
I’m so confused and in pain! Thoughts?

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So sorry to hear this and I can not imagine how upsetting it all is for you. I am worried that I may be starting down this same road in July.

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lauratys | @lauratys | Apr 26 7:07am
In reply to @me49 "Hi, marylemons, I was put on Fosamax 2 months after stopping Evenity. After 1st dose, I..." + (show)
@me49

Hi, marylemons,
I was put on Fosamax 2 months after stopping Evenity. After 1st dose, I had some stomach issues and joint pain, but that was expected. Three days after the second dose I developed headaches with visual auras. These headaches occurred daily for 2 weeks. I never had headaches with this frequency before. The doctor sent me for a CT which came back ok. I was then referred to a neurologist. By the time I could get an appointment, the headaches were gone. Right now,I am not on any prescription medication. I'll see the rheumatologist in a month and I'm due for a new dexa and bloodwork. Another commenter said the headaches could be due to low blood calcium levels. All I can say that I haven't had a headache since I stopped Fosamax.

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I tried Fosomax as well after Evenity. Terrible joint and muscle pain from it just like when I was on Evenity(I stopped Evenity after 11 month as I just couldn’t move) switched to Actonel and still some discomfort but manageable. I’ve been on Actonel about 7-8 months. Hope you find something that works for you! It’s a process!

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kristie2 | @kristie2 | Apr 26 9:16am
In reply to @windyshores "Evenity is causing burning and prickly sensations in my 4th month so I am stopping. This..." + (show)
@windyshores

Evenity is causing burning and prickly sensations in my 4th month so I am stopping. This side effect is unusual. I will wait as long as allowed and have the lowest possible dose, longest possible infusion of Reclast.

I was on cancer meds 5 years, Tymlos 2 years, Evenity 4 months, now Reclast. It is hard for all of us but we are trying our best.

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Windy shores,
I had burning down my neck to my right shoulder and now I don’t have that anymore. It was around the same timeframe 4th month . It lasted a few weeks . How are u doing on the reclast ?

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kristie2 | @kristie2 | Apr 26 9:24am

Rjkesal,
With Evenity I had lower back and middle back discomfort for at least 3 months and yes it was very uncomfortable. I even asked for a X-ray to make sure I didn’t have an active fracture.
I would say after 6 months I haven’t had any side effects. I am now on my 9 th month . 🙏

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drsuefowler | @drsuefowler | Apr 26 10:38am
In reply to @windyshores "Evenity is causing burning and prickly sensations in my 4th month so I am stopping. This..." + (show)
@windyshores

Evenity is causing burning and prickly sensations in my 4th month so I am stopping. This side effect is unusual. I will wait as long as allowed and have the lowest possible dose, longest possible infusion of Reclast.

I was on cancer meds 5 years, Tymlos 2 years, Evenity 4 months, now Reclast. It is hard for all of us but we are trying our best.

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@windyshores, did you take a full dose of Evenity this time or just one infusion? I'm interested because if I try Evenity, I will probably try the one infusion since I am so sensitive to all medications.

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2 replies
windyshores | @windyshores | Apr 26 5:27pm
In reply to @drsuefowler "@windyshores, did you take a full dose of Evenity this time or just one infusion? I'm..." + (show)
@drsuefowler

@windyshores, did you take a full dose of Evenity this time or just one infusion? I'm interested because if I try Evenity, I will probably try the one infusion since I am so sensitive to all medications.

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I did a full dose. So one month full dose, two months half dose, one month full dose.

You can decline the second shot. Even my flexible doctor would not prescribe one shot.

I am not on Reclast yet. I had Evenity 3 weeks ago.

Evenity peaks around day 5-7. The burning is easing a little. I have had it since I started in late December to varying degrees. It isn't a short term side effect apparently.

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1 reply
eugenia689 | @eugenia689 | Apr 26 5:46pm

I also just had my first injections about 2-3 weeks ago. I thought I was in the clear until about the third week, but now I am so fatigued and have pain in my neck and upper back. I finally thought that it might be side effects of the Evinity.

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1 reply
windyshores | @windyshores | Apr 26 6:44pm
In reply to @eugenia689 "I also just had my first injections about 2-3 weeks ago. I thought I was in..." + (show)
@eugenia689

I also just had my first injections about 2-3 weeks ago. I thought I was in the clear until about the third week, but now I am so fatigued and have pain in my neck and upper back. I finally thought that it might be side effects of the Evinity.

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Yes side effects seem worse in weeks 2-3, for me. The medication peaks at 5-7 days and the half life is 12 or so days, so half is gone at day 12. I am jsut finishing week 3 after injection and the side effects are easing. This has happened every time.

I do feel stronger, and walked 16 miles a few days ago.

Every time side effects ease, I think I will do another set of injections, but honestly this time the burning was not bearable. I have lupus and paresthesias and a page full of neuro codes including spinal cord damage so I don't want anyone to think this will happen to them.

I am super happy to have done 4 months. In the future I might be able to do short bursts between other meds, if the protocols develop in that direction.

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