← Return to My Experience on Evenity for Treating Osteoporosis

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@sal462

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.

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Replies to "I hope you are well, I am very belatedly seeing your message since I have the..."

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.