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Stopping Evenity Early

Posted by melanie1 @melanie1, Sep 17, 2022

I decided to stop Evenity after seven treatments because I seemed to develop increased symptoms of osteoarthritis in knees and hands while on it, in addition to generalized stiffness and joint pain. Has anyone experienced this or stopped Evenity for other reasons before completing 12 treatments?

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patwerthman | @patwerthman | May 27 6:50am
In reply to @marymary44 "I, too, had lots of side effects…the most common ones, as well as some that were..." + (show)
@marymary44

I, too, had lots of side effects…the most common ones,
as well as some that were obscure. I gave up after the 5th set of injections. My quality of life had been very adversely affected. (I have osteopenia in my spine and osteoporosis in my hips. Evenity is the first osteoporosis drug I have taken. It will be my last.) My last set of injections was March 27, 2025.
Although side effects persist, I am doing much better. I spoke to the pharmacist associated with my insurance plan’s prescription program. To the best of my understanding, he said it might take me until late June or early July before Evenity side effects were completely out of my system. I sure hope it is sooner than later. While taking Evenity, I
felt like I needed assisted living. I had difficulty walking and my balance was affected due to stiffness and muscular/joint discomfort and pain. Actually,
my husband did everything for me…cooked, cleaned. I hurt from my neck to my toes. I had mouth sores, terribly chapped lips, gum sensitivity above my upper teeth and below my lower teeth. The level of fatigue was intense. That could be due to constantly disrupted sleep because of joint and muscle pain that would strike in the middle of the night. I also had tinnitus and had an appointment scheduled with an ENT, but it seems to have left as quickly as it came on. Prior to Evenity, I was an extremely healthy 77 year old woman. I take no medication except synthroid. I do have osteoarthritis, but take no medication except Tylenol, as needed. I have had no fractures. This attempt to make my bones stronger has upended my life, robbing me of any quality. I share all this because most people (fortunately) do not suffer from all these side effects. I wanted those who do not breeze through taking Evenity to know that they are not alone.
Friends who have been through chemo therapy tell me that what I described is how they felt on chemo. The EOB form from my insurance company notated Evenity as chemo therapy. I ignored it, thinking surely not..that must be a blanket term that they use for the injections I was receiving.

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Oh my. I am still waiting for ok and to schedule Evenity. I believe I also must have arthritis as I ache and have for a few years. Back-several areas, hips, and I know I have likely lost an inch in height over the past number of years. Osteoporosis officially discovered in 2022 per my request, & was on alendronate for 3 years. New doctors sought, in process. How did they diagnose or discover your arthritis? I have not delved into that yet, & know little about it. Maybe there’s some good information. Wow. I am so sorry your experience seems awful. Yours isn’t the only one I’ve read. I don’t know what alternatives I have as my T score is high -3.7

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marymary44 | @marymary44 | Jun 9 10:53pm
In reply to @patwerthman "Oh my. I am still waiting for ok and to schedule Evenity. I believe I also..." + (show)
@patwerthman

Oh my. I am still waiting for ok and to schedule Evenity. I believe I also must have arthritis as I ache and have for a few years. Back-several areas, hips, and I know I have likely lost an inch in height over the past number of years. Osteoporosis officially discovered in 2022 per my request, & was on alendronate for 3 years. New doctors sought, in process. How did they diagnose or discover your arthritis? I have not delved into that yet, & know little about it. Maybe there’s some good information. Wow. I am so sorry your experience seems awful. Yours isn’t the only one I’ve read. I don’t know what alternatives I have as my T score is high -3.7

Jump to this post

I am so sorry to read this! I had not “checked in” until this evening. To answer your question: I have had arthritis in different specific areas of my body, starting with my knees and then my hands…many years ago. I was told by a hand specialist that I had arthritis. I was told by two different orthopedic surgeons that I had arthritis in my knees. I am seeing a rheumatologist, who has confirmed that I have severe osteo-arthritis in multiple locations, not rheumatoid. (Most of the time an X-ray or MRI can confirm osteoarthritis, and a blood test can confirm rheumatoid arthritis.)
My arthritis has been under control through dietary changes, primarily avoiding refined sugar, as well as carbs such as bread, rice, pasta, white potatoes. Basically, I eat meat, poultry, fish, fruit and vegetables, nuts, cheese, and eggs. (I avoid processed meats.) This enables me to keep inflammation very low. It’s worth it because I can’t tolerate anti-inflammatory drugs. Should I have a flare-up, Voltaren gel or Arnica Cream rubbed into the affected area works wonders.
However, the muscle and joint discomfort I suffered from Evenity did not respond to these over-the-counter products or to diet. The discomfort would hit in several places at one time and then eventually go away…most frequently the discomfort was located in my spine and lumbar region. It felt like a device was squeezing my scapula all the way down to my lower back. It affected the way I walked and my balance. During the last few days, I am greatly improved, though!! I plan to start PT to correct some of the bad posture and walking habits that developed as I attempted to cope with the stiffness and discomfort.
I believe you would KNOW if you had severe osteoarthritis.

I read that Evenity could cause joint and muscle pain, but I didn’t think much about it because I was already familiar with that, and I thought I had a handle on it. Boy, was I wrong, and it became worse as the months went on. So the Evenity did not cause arthritis; it just felt like a hideous case of it. I call it Evenity pain. I should have stopped after the 4th set of shots, but I figured I could tuff it out. That’s my fault for not listening to my body.

I wish and pray for only the best for you!!
If you thoroughly research the different drugs, you will learn a lot in order to make the best decision for you. I didn’t do that, but I sure wish I had. Reading posts from this site and joining some of the Facebook groups for Evenity and for Osteoporosis, as well as some of the other drugs like Reclast, Prolia, Fosamax, etc.
will provide additional information.

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