My Experience on Evenity for Treating Osteoporosis

Wow! Thank you for sharing your experience and medical wisdom! Your reassurance is a blessing to me! Let’s keep communicating as we walk through this together!

I have concerns that my twin sister taking Evenity injections has resulted in her having a altered mental status. I noticed a change in her after about the 3rd injection Jan. 2022.
We are identical and have always had a unique connection that is unlike single siblings. Now I can’t communicate with her because of her confusion.
Does anyone have a suggestion wherever I can’t get information?
If you take Evenity have someone monitor your mental status. It so easy for people to say, its just old age.
I am an RN with 25 years of acute care Psychiatric experience, I’m pretty sure of what I am seeing.

I have posted here before- I find your sister’s experience interesting! I ( also retired RN) was taking Evenity after having 2 compression fractures (T-8, T-12) while skiing - no falls, just going over small bumps. I’m 64 and this happened a year ago- no skiing since…
I started the injections all gung ho but after 5-6 months noticed I was feeling depressed and anxious and having trouble finding words, and in a brain fog. It took me a couple months to connect it with the Evenity.
But after consulting w my endocrinologist we decided to skip October’s injections.
Thankfully those symptoms seem to have lifted!
I took a Reclast infusion in November.
I do seem to have had a lot of URI since the fall but could be unrelated.
I reported my experience to Amgen.
Hopefully your sister’s mental changes will clear now that the drug is no longer in her system- it is supposed to clear by the end of a month.
I would definitely get a neurologist to evaluate her.
It could be unrelated or not.
Let us know how she is doing. She is fortunate to have you as her sister.

Leslie, thank you, thank you, thank you.
I could see so clearly what was happing to my sister’s mental status and have not had anyone to talk to.
So glad I found this discussion. Have you found any information pertaining to women who believe they have had a mental status side effect? Where did you get the information that your mind would clear in one month?How do you report to Amgen?
Her last injection of a series of 12 was in Nov. and she is about the same. Her Dr. has advised her to see a neurologist but she has not follow through.
How do you report to Amgen?
You sound exactly like a R.N. As nurses, our families really do need us. Medicine today is so complicated.

So let me try to respond to your questions:
I could find nothing in the literature about mental status changes, but have read others who have, on here and also a Facebook support group for Evenity. There’s also one for Reclast I’m in that has been helpful to hear of more people’s experiences.
My endocrinologist had never heard of brain fog but admits she doesn’t have many patients on it.(Another doctor prescribed it as I moved from Dallas to Austin last spring).
I read about the pharmacology online that said the half-life is 12 days, and my doctor confirmed it is out of your system by the time the next injections are due.
So if your sister had her last ones at the end of November she could just have cleared it.

If you go to the Amgen/Evenity website there’s a place to report adverse reactions- interestingly, they hadn’t heard of anyone with changes in their mood or fog.

So, it’s a new drug and while most seem to tolerate it well, others don’t.

You explain everything so clearly. I sure appreciate this information and will use it to follow up with. I wonder how many doctors ignore reports of mental changes with the use of Evenity and say it’s age related. That’s what they told my sister. She describes, “brain cloudiness.”She has difficulty following conversations. There are probably more reactions than reported and that is why I want to. Very few articles, but more have not, that I have read about Evenity has listed “memory loss,” as a serious side effect.
We are identical twins and all these years, until now, have had the same age related change. I have not taken Evenity.
The half life of a medication has always been something that interest me. I did not think of that here. Thank you.
I am from Corpus Christi, left Texas when I married a career Navy man. I miss living there too this day. I have family in Dallas and Houston.

Hi! I just discovered this group yesterday and appreciate all your comments. I had 4 stress fractures in 6 months two years ago. I was put on Forteo and will be finishing the 2 years in March. My endocrinologist says I need to followup with another drug. He suggested reclast or prolia. I am concerned about all the side effects and not being able to stop and especially the horror stories of fractures after prolia. Has anyone actually tried the Evinity after Forteo (is it allowed)? Dr said I could try the Fosomax for awhile if I am unsure. I am not only concerned about muscle/joint pain in that I am an avid walker. And when I can't do that with family and friends, (when I had stress fractures for a year), I suffered a lot of depression because of lack of quality of life. I agree with the other ladies who said they would rather have some quality of life vs quantity of life. Any suggestions to the follow-up to Forteo? Thanks!!!

I watched a masterclass video with Dr. Lani Simpson and her guest did Evenity after Forteo (or Tymlos, I forget which). They said it could be helpful, but doing Forteo after Evenity would not be as helpful so sequence was important.

I am finishing Tymlos in March and my doc is going to do 1/4 dose Reclast with slow infusion (and lots of hydration, maybe premedication) to see how I handle it. Fosamax is not possible for those of us with GERD but maybe you can take it.

I have a total of 7 fractures. Yesterday I reached up for something on a shelf in the store and have bad pain, and am always afraid I fractured something else. I am afraid to find out!

Being an identical twin gives you a great comparison- may I ask if you also have osteoporosis?
Wondering why your sister does and not you if you don’t?
I found social interactions exhausting but didn’t really have memory loss. After stopping Evenity, my mood lifted and my focus returned dramatically. My husband and daughter noticed it so it confirmed my own conclusion.

My experience as a patient and nurse is providers downplay when we report side effects. My endocrinologist listened to me and didn’t try to talk me into staying on Evenity. Though her first recommendation to switch to was Prolia.
After reading about how you can’t stop it and can have worse fractures if you do makes me leery.

Thanks windy shores for your response. My Dr did not mention the option of a slower start of the reclast to test it. I am in the process of looking for a rheumatologist to get another opinion from the endocrinologist I am currently seeing.

I was just about ready to go ahead with the Reclast until I came upon the review section on Drugs.com. There are not only the comments of unending body aches, joint pain and migraines but some patients commented on extensive hair loss. Have you heard this?

Good luck with your treatments. I hope all goes well. Have you had an updated DEXA since being on Tymlos? I Pray for no more fractures for everyone!