Evenity Side Effects

Posted by cincy @cincy, Dec 27, 2023

Has anyone had severe back pain and burning sensation on Evenity after just starting ?And how long does it last or is it a sign to try another medication?It starts about 7 days after the injection and pain is severe you can’t do a thing.Thanks.

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@eugenia689

I just had my second round of injections today. After my first injections I did some internet research (and watched a lot of YouTube videos) so I had my side effects all written down and the dates marked on my calendar when I had the pain in my neck and hip and the lethargy. My care provider immediately shut me down and said there are no side effects to the drug because it’s a subcutaneous injection. She said there is no point when the drug peaks-it peaks at 6 months. She even said something to the effect that it sounded like I was trying to find an excuse to stop taking the drug and if I search the internet I can find excuses for everything. Well, I’m kind of flabbergasted at this point and she then turned real nice and asked me about my Mother’s Day. I have pretty much committed myself to taking this drug because of my family history and I am 71 years old, 105 lbs., and had a broken arm in December (I had a bicycle accident totally my fault). I do yoga classes 2-3 times a week and practice at home daily. I am fairly active. What are your opinions on this situation? I what are your experiences with “side effects” of Evinity or just Evinity in general? Thanks!

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I, too, have a doc that probably thought my symptoms were psychosomatic because there were so many - when one disappeared, another appeared (while on Tymlos). He said it likely wasn’t Tymlos because those (my) symptoms weren’t listed in the registry. But, he stopped short of accusing me of making up symptoms to stop using Tymlos, so there’s that.

Unfortunately, when I tried to request a change in providers, I was met with, “He’s brilliant! It’ll need to be run up the chain of command, the department supervisor will need to sign off, yadda, yadda, yadda”. As of July, when my Evenity injections are finished, I hope to say buh bye! The issue here is that in a small town, there aren’t many docs to choose from, and I’ll likely need to travel about an hour to see a one; but that’s okay. One other thing: Some docs don’t really seem like they’re interested in helping “old people” - I, too, am 68, about to turn 69 - and get pretty pissed when some docs dismiss issues because, “You’re not as young as you once were and things start to break down.” Piffle!

I commend everyone who keeps a diary of the various pains and problems - I only kept one while on Tymlos, day by day, how I felt and it’s depressing to read it.

Now, for Evenity. Outside of the usual redness and a bit of “pain” at the injection(s) site for a few days, nothing unusual. Sorry it took so long to get to the point.

I wish you and everybody who’s going through these treatments, the absolute best care and best results! Cheers!

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@eugenia689

I just had my second round of injections today. After my first injections I did some internet research (and watched a lot of YouTube videos) so I had my side effects all written down and the dates marked on my calendar when I had the pain in my neck and hip and the lethargy. My care provider immediately shut me down and said there are no side effects to the drug because it’s a subcutaneous injection. She said there is no point when the drug peaks-it peaks at 6 months. She even said something to the effect that it sounded like I was trying to find an excuse to stop taking the drug and if I search the internet I can find excuses for everything. Well, I’m kind of flabbergasted at this point and she then turned real nice and asked me about my Mother’s Day. I have pretty much committed myself to taking this drug because of my family history and I am 71 years old, 105 lbs., and had a broken arm in December (I had a bicycle accident totally my fault). I do yoga classes 2-3 times a week and practice at home daily. I am fairly active. What are your opinions on this situation? I what are your experiences with “side effects” of Evinity or just Evinity in general? Thanks!

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I drive 30 minutes to get to my orthopedic group and there is only one nurse practitioner who gives the Evinity injections, so, like you, I will continue my small town life, my documentation, and 10 more rounds of Evinity. Maybe I won’t be so “invisible” next time. Hang in there!

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@triciaot

My opinion? Your provider believes it’s okay to insult the patient. Like you, I record dates and changes in my functioning (side effects). It provides factual data that a medical professional should rely on to determine care.

I want to a gastroenterologist after working with my PCP for months trying solutions to my stomach issue (tests, FODMAP, etc). My PCP is excellent but decided a specialist was needed. The gastroenterologist, after talking with me for a short time, said “old people like you usually take Imodium” (68 yo). I looked at her and said I would not be doing any follow-up care with her.

I hope you can find another doctor that respects the info you’ve gathered, and listens to what is happening to your body.

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Good for you! How condescending and dismissive are some medical “professionals”. Maybe I won’t be too shocked to call her out next time! I live in a small town and have to go 30 miles for this injection and she is the only one in the group who gives them. I’m just going to continue with Evinity and document everything! Good luck to you!

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@windyshores

It seems your doctor has not read the insert with info for professionals (which we can access too, on the Evenity website).

https://www.pi.amgen.com/-/media/Project/Amgen/Repository/pi-amgen-com/Evenity/evenity_pi_hcp_english.pdf

Evenity peaks days 2-7 with 5 days the median. Half life (when half is gone) is 12.8 days after 3 months. And it hangs around in the system, I believe, for 65 days.

Not only was your doctor wrong, she did not take the time to check her information and doubted yours. I know it is hard to find a doctor and the wait can be long but I have you have an alternative. That said many of us have found our doctors do not read side effect lists either, and say things like "I have not heard that from anyone else" when it is actually listed as "common" !

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I had read all about Evinity before I started the series and I felt pretty informed. I thought that as the medical provider she might want to know these things. I don’t expect that she knows everything, but as the only one in that orthopedic group who gives Evinity injections, I do expect her to know a lot about this drug (and to not be condescending and dismissive). I’ll be better prepared next month!

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@gently

eugenia689 oh so your provider forgot to read the package insert or even the large black box. Beyond that you have a provider who ridicules your concern with invented motivation and diverts the consultation to social nonsense.
"During EVENITY® treatment, patients should be advised to report new or unusual thigh, hip, or groin pain."
"The most common side effects of EVENITY® include joint pain and headaches."
You deserve better care.
https://connect.mayoclinic.org/search/?search=evenity+side+effects

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Thank you for this most excellent reply! I feel more empowered and validated after reading your comments. Please know that your reply has really lifted my spirits in this confusing and low part of my life! I’ll be better prepared next month and will continue my documentation and reporting. Good luck to us all!

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@eugenia689

I just had my second round of injections today. After my first injections I did some internet research (and watched a lot of YouTube videos) so I had my side effects all written down and the dates marked on my calendar when I had the pain in my neck and hip and the lethargy. My care provider immediately shut me down and said there are no side effects to the drug because it’s a subcutaneous injection. She said there is no point when the drug peaks-it peaks at 6 months. She even said something to the effect that it sounded like I was trying to find an excuse to stop taking the drug and if I search the internet I can find excuses for everything. Well, I’m kind of flabbergasted at this point and she then turned real nice and asked me about my Mother’s Day. I have pretty much committed myself to taking this drug because of my family history and I am 71 years old, 105 lbs., and had a broken arm in December (I had a bicycle accident totally my fault). I do yoga classes 2-3 times a week and practice at home daily. I am fairly active. What are your opinions on this situation? I what are your experiences with “side effects” of Evinity or just Evinity in general? Thanks!

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Hello @eugenia689, I moved your discussion and combined it with an existing discussion titled, "Evenity Side Effects" - https://connect.mayoclinic.org/discussion/evenity-7/ so that you could meet the many members sharing their experiences with evenity and side effects.

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Anyone that had side effects from Evenity, when you stopped taking it, did the side effects go away? My 12th and last shot is scheduled for mid May and I'm hoping my back pain/burning/tingling goes away.

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