← Return to My Experience on Evenity for Treating Osteoporosis

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@galactica

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.

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Replies to "Thank you so much for posting. My Dr. is pushing hard for me to go on..."

I think we all feel that way. We all hear of the side effects of the different medications and it's terrifying. And the fear of fracture is terrifying as well. So, what to do??
I'll share my story again in response to your post as you weigh this important decision. I, like many, did not want to go on meds. I was diagnosed at 57, shocked to learn I had osteoporosis even though I was extremely health conscious and exercised daily (hiking, dance, weight training, etc). I rejected meds, deciding instead to go all-in on improving my density naturally. I was convinced that if I just paid even greater attention to my already healthy diet and lifestyle, I could definitely achieve the results I was looking for. I began to calculate my daily nutrition to make sure I met all of my daily goals. I increased my exercise, got a weighted vest, a standing desk so that I never sat at my computer any more, strengthened my core and worked out about 2 hours a day. I wanted to give it a full 2 years to get optimal results. Epic fail. In the 2 years of extreme diligence, my spine went from 2.8 to -3.2. I was devastated once again. At that point, I knew that I had to get over my fear of the meds as I could not continue in this decline. I decided on Forteo as it was a bone builder specifically at the spine. I had no side effects and a small gain ending with my spine at -2.9. Had I gone on Forteo from the start, that gain would have brought me out of osteoporosis but now, that is not in my sights. After Forteo, in my early 60's, I chose bioidentical hormones as the most "natural" approach to holding onto my gains. I have somewhat maintained the level in my spine and had some increase in my hips. It is very easy to lose bone in menopause but it is very very difficult to gain it back, and for most, it is impossible. It's just not the way the body works as we age.
I don't know your age or your level of osteoporosis but I just thought I'd share my story of trying to achieve this naturally with 100% effort and 100% fail.

I, too, have drug sensitivity. I stopped Evenity after 6 doses. I had spasms, fatigue and brain fog. Tingling on my arms, scalp and finger tips. I was put on Alendronate and after the second dose, I had daily migraines. Not just headaches. The aura too. The CT came back ok. Your feelings are normal. These drugs are potent. Unfortunately, we are long term data for drug companies. I was on Actonel for about 10 years before the FDA said it leads to brittle bones. Whatever you decide to do, listen to your body and research the drug before you commit to a protocol. Best wishes.

Totally with you there. I'm so worried about it, but I have so many drug reactions. The few osteoporosis drugs I've tried...one dose gave me enough side effect, severe to make me stop. Fosomax - horrible GI pain, Tymlos - severe migraines, Evenity - disabling insomnia...and now tooth sensitivity though not sure it's from that, and I have pretty significant osteoporosis, but trying to do whatever I can without meds for now. Am on estrogen/prog. for menopause, and so far ok on that. My body just doesn't like anything it doesn't recognize. Try to stay active, weight bearing activity, some qigong/meditation, vitamin MK4, collagen protein. Doctors really pressure you and make you feel guilty, in my experience, like its the drugs or you die..it's terrible. It makes me not trust them. They should always present any alternatives. There are many that simply cannot take certain meds.

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.

Hi,
Everything you said is exactly how I’m feeling. I went to two different doctors about my Osteoporosis of the spine and one said Tymlos is the only thing that will help and the other doctor said Evenity. I came close to signing up for my monthly shots but all of my questions and worries kept me up at night. Finally I decided to wait and try exercise, OsteoStrong and low dose estrogen cream with progesterone. I’m hoping I didn’t make matters worse. The upside is that I am very active, happy and feel good. I don’t want to lose the quality of life I have now. Please let me know if you find out anything that helps with your spine. I’ve never had good luck with pharmaceuticals. Sending good thoughts your way!