My Experience on Evenity for Treating Osteoporosis

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 am so sorry this happened to you. I finished 5 doses of Evenity and had to stop. I had minor side effects that I could handle: feeling tired, headache, some aches and pains, a little brain fog. But after the 4th dose I started getting heart palpitations. I spoke with my MD ( Rhuematologist) regarding this and he said if it gets worse I should stop and he would not put me on anything because I have had no improvement to any medication I have been on. Well after the 5th injection they did get worse. I went to a different MD( Endocrinologist) today for another opinion on what I should go on and she had no clue. Very sad really. She actually said to me " If you break a hip, you can get a hip replacement". I am only 62 years old! At this point, I will continue to take my supplements, walk everyday, meditate and live life to the fullest. I am very frustrated with the medical community at this time.

I am so sad to hear about your negative experience with Evenity. After my first set of Evenity injections, I had severe adverse reactions and never went back. My body was literally screaming with pain from inflammation. It’s been six months and I am just getting back to normal. Back to supplements and exercise. No more new meds for me. Hope that your heart will heal itself. Wishing you the best!

Hi, It is frustrating. I’ve posted before about stopping Evenity myself after 11 mos, should have stopped sooner, as I could not move without pain and am very active -hike, ski, mountain bike. I felt like I gave myself significant arthritis. Pad for a scan and had amazing results. BUT, with that said listen to your own body along with medical advice because you alone know how you feel and what is normal for you. I’m pretty sure my medical professional thinks I have an anxiety issue about Evenity but it made me feel like I was 90 and I’m 67. I’m on Fosomax now and reading Great Bones for a more educated approach myself. Hope you feel better but I remind myself that medicine is a science ever evolving and doesn’t have all the absolutes!

Hi,
I got my first Evenity injection today. After about 30 minutes I started to feel very light headed and my hands were cold. The light headedness lasted for over an hour or longer and then began to gradually subside throughout the day.
The staff at the infusion center attributed the light headedness to my anxiety and asked me if they should call 911. My BP was elevated. I declined going to an ER. Feeling much better now. Has anyone experienced the light headedness after the injection? I will also inform my rheumatologist.

I am wondering if I should bother having a DEXA scan after only 5 doses. The Endocrinologist I went to for a second opinion said she has no idea, and she didn't bother to offer to call other specialist that might know or help. The Rheumatologist wants to put me on Fosamax. At this moment I feel like my bottle needs to recover from the Evenity side effects. I am also halfway done reading " Great Bones" and have learned so much. I wish he had written it years ago when I was first diagnosed. This site has helped me so much with support and venting and of course Education. I only wish I could go to the MAYO clinic to get their opinion of how to proceed with my issues.

Sorry to hear this happen to you, can you tell me how high your BP was? These effects are not common. Were you very anxious before/after the injection? You need to hydrate really well before and after the injection. Please let us know how you are doing.