My Experience on Evenity for Treating Osteoporosis

New to this forum. I've read several of the posts and want to add my comments. I've been on Evenity since last September so only few more months to go. I pretty much had no choice in taking this drug. I'm 71 yrs old and have had several fractures throughout my life primari!y due to a hereditary disease I have OI which is brittle bones. Having this disease has been very detrimental to my osteoporosis. I took Actonel for years and Forteo for two years about 15+ yrs ago. The Forteo helped build bone but at that time could only take for 2 years. Then went to Prolia about 6 years ago. Had a bad fall last March - broke pelvis, sacrum and ribs so highly recommended Evenity. I've got extremely bad osteoporosis. Last few months I've had my injections in my thighs to give my arm a break. I've had the normal redness and swelling at injection site but also feel muscle weakness and joint pain. Few of the other symptoms as well but because I have arthritis and chronic back pain don't know if it's just normal for me. Sure am hoping this drug works for me - my doctor is very optimistic it will. He's seen a lot of success with people taking Evenity. Going back on Prolia is in my future but no previous problems taking that. Hope you all have excellent scans as a result of taking it.

New to this forum. I've read several of the posts and want to add my comments. I've been on Evenity since last September so only few more months to go. I pretty much had no choice in taking this drug. I'm 71 yrs old and have had several fractures throughout my life primari!y due to a hereditary disease I have OI which is brittle bones. Having this disease has been very detrimental to my osteoporosis. I took Actonel for years and Forteo for two years about 15+ yrs ago. The Forteo helped build bone but at that time could only take for 2 years. Then went to Prolia about 6 years ago. Had a bad fall last March - broke pelvis, sacrum and ribs so highly recommended Evenity. I've got extremely bad osteoporosis. Last few months I've had my injections in my thighs to give my arm a break. I've had the normal redness and swelling at injection site but also feel muscle weakness and joint pain. Few of the other symptoms as well but because I have arthritis and chronic back pain don't know if it's just normal for me. Sure am hoping this drug works for me - my doctor is very optimistic it will. He's seen a lot of success with people taking Evenity. Going back on Prolia is in my future but no previous problems taking that. Hope you all have excellent scans as a result of taking it.

You might find out if they'll give you the shots in the abdomen. That seems to be a good place for mine. I'd think the arms and legs would be more painful.

Thank you so much for posting. My Dr. is pushing hard for me to go on Evenity. I have osteoporosis. I have some kidney issues and I have had a cracked tooth pulled in the past, bone loss in the jaw and another cracked tooth with a crown protecting it. Dr. is telling me that the atypical femur factures, necrosis of the jaw and side effects are rare and I'm worried about nothing. I just can't get with that cavalier attitude when the paper for the script gives me a phone number to call immediately if I am having pain in my legs after or during the injection therapy.

I can't seem to get past my gut telling me this is not a good idea. I have severe osteoporosis and the side effects I am reading that people are having, posted here and on other sites give me pause. I can't seem to get a real sense of what the actual patient experiences are from my Dr. I also have an issue with accountability. What happens if and when side effects occur? Who helps or undoes, or fixes those? I have to live with the consequences. I am asking myself if the reduction in quality of life which may or may not resolve and from what I have read above and elsewhere and are experienced on a daily basis are worth a few percentage points. I am wondering what support and active participation the pharma company is taking to support and address the issues/ side effects women are experiencing or is it simply, "well, we listed the risks, sorry", and they get on with their day while we live with these issues.

I am not saying to stick one's head in the sand or be in denial, but I feel like I have to really exhaust all possible solutions that are not medication based. An inclusive diet, exercise, cardio, energetic and mind/action approach. I want my decision to feel like I am doing this with as much awareness as possible because at the end of the day, the only one who will have to live with this is me. And I do not want to act out of fear or feel pressured.

These are all the issues that are circling around in my head given my recent not great dexa scan. I have healthy bone density in my femur, thighs. Spine is problematic. Do I want to trade this and feeling great now for all the irreversible risks? It takes a good two years for bone to remodel and if I am diligent, i mean really diligent, leaving no stone unturned and give myself the best non-med care and protocal, can I make a difference? That is where I am and that is what i am leaning towards vs a stonger spine but feeling horrible on a daily basis with no resolution of issues.

Anyone else have these feelings? Everyone who posted here at the onset of your treatment, I'd be interested to know how you are feeling as you progress. I am hoping to hear that it's all going well. I want to hear that, as this is still a very new drug and I have a lot of sensitivities. I await your truthful and hopefully good and not so good responses, i want to hear it all as I think this will be helpful to all.

Thank you.

I finished my Evenity shots last month (April). The only side effect I had was stiffness in the joints after a couple of months but it went away. This week I had both my Reclast infusion and a bone scan. I felt a bit fluish for a day and a half after the infusion and then felt fine. The results of the scan were better than I expected. The spine and total hip measurements moved me from osteoporosis to osteopenia. The femoral neck measurement went from osteopenia to normal. Overall, I am very glad I went through the process. A lot of people have reported very bad side effects so I count myself lucky. I hope others have the same positive results.

Did you have a full Reclast infusion following Evenity? Die your doctor suggest a smaller trial dose or just jumped into a full year dose?

I hope you are well, I am very belatedly seeing your message since I have the exact same issues.

I first got a bad bone density autumn 2015, not SO bad, osteopenia. I roller blade and ski, didn't ski that year, was a little nervous. Roller bladed fall 2016 & for 3rd time IN LIFE and decades skating fell on totally flat ground, just suddenly felt I'd hit something, thought "omg I'm going to fall with my osteoporosis" and it was like in slow motion. Will always wonder if some self-destructive subsconscious part of me MADe me fall now that I had bad bones.

Broke wrist despite wrist guard, they say that mean osteoporosis but I'm not sure.

Next test, 2018, I was a little better, Dr. said I could prob ski. But then other things interfered 2019 and then 2020 decided -right before Covid - to get one more test before skiing. Test was worse than before. Did see dr before Covid shut down late Mar. NOw she REALLY wanted me to do Evenity. Described it as a "lovely" drug for me. Went home and read side effects and it didn't sound lovely at all. Dentist later said he liked the old ones like Fosomax because the shelf life was shorter, so if you needed dental work it would be out of you body. Oral surgeon later said that I had had all this expensive dental work, but the problem was there was dental work i my future. To me it wasn't nec so FAR in the future, I always seemed to have some root canal that mighth happen or might not have worked, then implant that MIGHT happen or , now, might now have worked. I just didn't want to risk this. Plus the back box about the heart attacks and strokes not so great either.

So like you I decided to just be diligent with the alternative measures but have to say I'm not THAT great. I still eat sugar (an inflamatory) and don't really load up weight wise - I do about 4 lb dumbbells , just three exercises, and do bridges and sometimes leg lifts under a weighted blanket. I do wear a weighted vest while walking and on treadmill (made the mistake of doing elliptical for years, apparently impact is nec for bone growth). I wonder about vibration but not sure expense worth it and the retina damage thing is a little scary.

Somehow in 2022 my neck femoral (hate the 'neck' term, so confusing) was worse despite this - but remember I wasn't THAT diligent, but my spine was better. Dr wouldn't believe spine was better, she thought it meant I had a fracture. My walks with the weighted vest apparently meaningless.

I still resisted the Evenity, said lets do another test in a year. She was very against that - maybe if I got better insurance wouldn't cover the Evenity and that's what she was scared of - so here I am one year post last bone density and feeling like I have to get really really disciplined. I had a set back - tho never had back issues did something to my back in april, killed me for about 3 weeks. I did get an MRI afraid it was a fracture, it wasn't , was a disc but I lost some time. I also found out I absolutely can't have an injury involving pain - always knew from taking non-steroidals that they made me dizzy after 1 or 2 days, this time I had to take them but when the dizziness got too much after a week I went back to pure Tylenol. Even THAT made me dizzy. SO I really can't afford a fracture, or anything really that involves pain.

My doctor holds out skiing like the carrot on a stick to get me on Evenity: "if you take it you can ski again." But for now I'm just too scared.

I tried Evenity and since the first infusion in April of 2023 my life's been a mess. First side effect was insomnia. Couldn't sleep for more than 3 hours at a time. As the time for the next injection neared, the insomnia eased up but was right back after the shot. This time accompanied by lack of energy and a feeling of not being well. But I hung in there. After the third shot, my a-fib, which I had before beginning Evenity and was told not to be concerned about got worse, along with light headedness and low blood pressure. My eyes began to swell in the morning. All these symptoms were reported to my doctor who assured me they were not caused by Evenity. No one reported symptoms like this in clinical trials. Then I checked the clinical trials and made an appointment with my cardiologist who compared the EKG he did before starting Evenity with the one he did that day. So now I'm hooked up to a heart monitor because something not good is happening to my heart. If I had my choice of continuing to live like this just so I might be able to ski one day or get back to normalcy in my life, I sure wouldn't choose skiing.