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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@awfultruth

@drsuefowler Perhaps I've already mentioned this to you but just so others reading these threads discussing Evenity side effects don't get too depressed I'll repeat this - Evenity does not always or even often cause noticeable side effects. Even in sensitive people.
I've been severely food and chemically sensitive for over 40 years and I'm (knock on wood) having only the slightest side effects with Evenity. By slight I mean I get mildly stimulated from the injection and that lasts through the day of the shot. I get a slight pressure in my forehead which does not get bad enough to be called a headache. In contrast my eating the wrong food (and most all foods fit in the wrong food category for me) or smelling the wrong odor can wreck my day. Quite amazing to me how very very little trouble I'm having with Evenity.
But I am not discounting the experience of others who are having really unpleasant side effects, not at all - I just wanted to say that the odds for any given person even those sensitive types, may not be very high?
I do find it strange that all the osteoporosis meds seem to have pretty awful side effects for some while others have little to no side effects. Such a huge range of reactions to these drugs!
I wish it was more clear what percentage of us have the bad side effects to the different osteoporosis meds. And of course we need some means to predict who might or might not react badly.
Myself as I'm past shot 7 of Evenity, am most worried about the next med.

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All - For what it’s worth, I’ve had the following prescribed to me since 2011 and all at “full strength” (meaning no partial doses): Several different oral bisphosphonates, Reclast infusions for five years (from 2011), Reclast again in the early 2020’s, nine months of Tymlos and now, Evenity (10 months in).

The oral bisphosphonates caused stomach issues which prompted my doc to prescribe Reclast. No issues with Reclast in either series. Although Reclast seemed to keep my bones “holding steady” it seems after my early ‘20’s infusions, my doc learned of drug holidays and halted the infusions. Tymlos caused so many issues for me that I finally told the doc I’d had enough. Enter Evenity and so far, so good.

Honestly, I’ve been preparing to ask the doc to prescribe Reclast post-Evenity because of no previous issues with it; at first he said that would be fine, but lately both he and his CRNP are dragging their feet and pushing Prolia . . . without telling me why. Also, with the posts here, I’m beginning to fear Reclast as well.

It has become evident that what works for one of us will not work for others. Don’t be afraid to challenge your doc about starting and/or stopping meds that they deem necessary, safe or helpful . . . If I had spoken up sooner about my desire to stop Tymlos, I could’ve likely saved thousands of dollars and countless time in docs offices, ER’s, etc. My rheumatologist was well aware of my symptoms, but never once considered that they could be caused by Tymlos because “those symptoms aren’t listed” on the manufacturer’s website; my quick call to Radius and they are now!

Thanks for listening as I drone on about my Tymlos issues, the med does seem to work for some, but I’m pretty pissed about how long it took my doc to react to such debilitating problems.

Wishing everyone great bones! Cheers!

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@beanieone

All - For what it’s worth, I’ve had the following prescribed to me since 2011 and all at “full strength” (meaning no partial doses): Several different oral bisphosphonates, Reclast infusions for five years (from 2011), Reclast again in the early 2020’s, nine months of Tymlos and now, Evenity (10 months in).

The oral bisphosphonates caused stomach issues which prompted my doc to prescribe Reclast. No issues with Reclast in either series. Although Reclast seemed to keep my bones “holding steady” it seems after my early ‘20’s infusions, my doc learned of drug holidays and halted the infusions. Tymlos caused so many issues for me that I finally told the doc I’d had enough. Enter Evenity and so far, so good.

Honestly, I’ve been preparing to ask the doc to prescribe Reclast post-Evenity because of no previous issues with it; at first he said that would be fine, but lately both he and his CRNP are dragging their feet and pushing Prolia . . . without telling me why. Also, with the posts here, I’m beginning to fear Reclast as well.

It has become evident that what works for one of us will not work for others. Don’t be afraid to challenge your doc about starting and/or stopping meds that they deem necessary, safe or helpful . . . If I had spoken up sooner about my desire to stop Tymlos, I could’ve likely saved thousands of dollars and countless time in docs offices, ER’s, etc. My rheumatologist was well aware of my symptoms, but never once considered that they could be caused by Tymlos because “those symptoms aren’t listed” on the manufacturer’s website; my quick call to Radius and they are now!

Thanks for listening as I drone on about my Tymlos issues, the med does seem to work for some, but I’m pretty pissed about how long it took my doc to react to such debilitating problems.

Wishing everyone great bones! Cheers!

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It's possible Tymlos would have worked for you @beanieone, at a reduced dose or with a protocol for ramping up slowly to whatever you could tolerate.

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@windyshores

It's possible Tymlos would have worked for you @beanieone, at a reduced dose or with a protocol for ramping up slowly to whatever you could tolerate.

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@windyshores, Perhaps, but I’ll never know and I can’t worry about it because Evenity is working well for me. My DEXA scores improved greatly compared to my last one (2022 vs 2024) and I can’t honestly give sole credit to either med.

If I had thought about it, or had read your posts about ramping up the dosages beforehand, the outcome may have been different. This med is marketed as a “one dose fits all”, but there should be additional research done for those of us who are smaller in frame, body weight, and/or stature. I felt like I had been poisoned - within a few days to a week after stopping Tymlos, the side effects had subsided. I’m glad you were able to work through any problems you had with Tymlos. We all need to find what works for us. Cheers!

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@beanieone

@windyshores, Perhaps, but I’ll never know and I can’t worry about it because Evenity is working well for me. My DEXA scores improved greatly compared to my last one (2022 vs 2024) and I can’t honestly give sole credit to either med.

If I had thought about it, or had read your posts about ramping up the dosages beforehand, the outcome may have been different. This med is marketed as a “one dose fits all”, but there should be additional research done for those of us who are smaller in frame, body weight, and/or stature. I felt like I had been poisoned - within a few days to a week after stopping Tymlos, the side effects had subsided. I’m glad you were able to work through any problems you had with Tymlos. We all need to find what works for us. Cheers!

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@beanieone glad you are doing well on Evenity.! I cannot tolerate it, even when I did a half dose. We are all different!

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It's is discouraging to have any of these injections/infusions resulting in feeling as if poison has been injected into your system. Then to be told by your doctors, nurse, even the receptionist, "None of our other patients have these reactions." This makes you feel as if they believe you are a liar or mentally off. But they do not know my body or its reactions. This blog helps me in two ways - first to hear others have had bad reactions/others sail through it all and secondly to learn of the end results for those who stick with the injections/infusions of any of the meds having had good or bad experiences. Reading of the positive results from Evenity has helped me stick with it, even though it is causing severe flares from Sjogren's. These flares are bad but at least I am not having a stoke or a heart attack. Without honest discussions by the patients stating both good/bad experiences we have only the drug companies to reply on. And Big Pharmacy's main goal is profit.

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Hello everyone, I have been struggling since being on Evenity. My issues started after my 4th injection. It seems like the medication is magnifying all my pre-existing conditions. Two years ago, I started having reoccurring pneumonia, (confirmed by x-rays). I have a history of sinus issues, mild rosacea, and have always had a minor shaking of my hands, which no one really notices. Since my 4th injection I have been on more antibiotics than in the last five years. The antibiotics are for reoccurring sinus issues that trigger pneumonia and severe rosacea with acne. At this point my doctor has prescribed 100 MG of Doxycycline HYC once a day for 30 days but will renew if my pneumonia systems come back once my 30 days is over. He prefers to keep me on a low dose of antibiotics so I can finish my injections because he believes it is important I finish the Evenity treatments. I have been to an allergist/internal medicine and pulmonologist, and they cannot find any reason why I am experiencing these reoccurring issues. The only change is the Evenity treatments and of course like most I have gotten COVID but I don't think my continued issues stem from COVID. I have had the flu and pneumonia shots as well and I have had reconstructive sinus surgery (six years ago). It is my believe that the Evenity injections are triggering or magnifying all my pre-existing conditions. I have two more sets of shots to go, and I have read that it takes about two more months before the drug is cleared from your system. My last shot is in May. So hopefully by July my entire system will calm down and I can start to see some relief. I wish you all the best and I hope and pray these shots are improving our both health especially considering the discomfort, time and money they require. Best of luck!!

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@beanieone

All - For what it’s worth, I’ve had the following prescribed to me since 2011 and all at “full strength” (meaning no partial doses): Several different oral bisphosphonates, Reclast infusions for five years (from 2011), Reclast again in the early 2020’s, nine months of Tymlos and now, Evenity (10 months in).

The oral bisphosphonates caused stomach issues which prompted my doc to prescribe Reclast. No issues with Reclast in either series. Although Reclast seemed to keep my bones “holding steady” it seems after my early ‘20’s infusions, my doc learned of drug holidays and halted the infusions. Tymlos caused so many issues for me that I finally told the doc I’d had enough. Enter Evenity and so far, so good.

Honestly, I’ve been preparing to ask the doc to prescribe Reclast post-Evenity because of no previous issues with it; at first he said that would be fine, but lately both he and his CRNP are dragging their feet and pushing Prolia . . . without telling me why. Also, with the posts here, I’m beginning to fear Reclast as well.

It has become evident that what works for one of us will not work for others. Don’t be afraid to challenge your doc about starting and/or stopping meds that they deem necessary, safe or helpful . . . If I had spoken up sooner about my desire to stop Tymlos, I could’ve likely saved thousands of dollars and countless time in docs offices, ER’s, etc. My rheumatologist was well aware of my symptoms, but never once considered that they could be caused by Tymlos because “those symptoms aren’t listed” on the manufacturer’s website; my quick call to Radius and they are now!

Thanks for listening as I drone on about my Tymlos issues, the med does seem to work for some, but I’m pretty pissed about how long it took my doc to react to such debilitating problems.

Wishing everyone great bones! Cheers!

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Beanieone, it is so helpful that we hear your experiences. The real world effect is the most valuable part of this site. And you give excellent advice about trusting your symptoms when they aren't listed on the manufacturer's website. Thanks

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@gently

Beanieone, it is so helpful that we hear your experiences. The real world effect is the most valuable part of this site. And you give excellent advice about trusting your symptoms when they aren't listed on the manufacturer's website. Thanks

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Thanks, Gently! I (and probably some doctors) thought I was going crazy with so many different and odd symptoms. Lesson learned - the hard way. Cheers!

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@windyshores

It's possible Tymlos would have worked for you @beanieone, at a reduced dose or with a protocol for ramping up slowly to whatever you could tolerate.

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I have to start reclast after Evenity and do you have any tips I could use for wanting to start with smaller doses at first…if Reclast is given once a year…( is it?) then aren’t we pretty helpless to help ourselves all year?
Advice needed on how best to communicate and help ourselves…I was only given two choices Reclast & Prolia…not any discussion at all just choose.

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@sando

I have to start reclast after Evenity and do you have any tips I could use for wanting to start with smaller doses at first…if Reclast is given once a year…( is it?) then aren’t we pretty helpless to help ourselves all year?
Advice needed on how best to communicate and help ourselves…I was only given two choices Reclast & Prolia…not any discussion at all just choose.

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@sando you could ask for a 20% test dose, with IV hydration and slow infusion, and tylenol. Lower doses are given more often though.

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