← Return to My Experience on Evenity for Treating Osteoporosis
DiscussionMy Experience on Evenity for Treating Osteoporosis
Osteoporosis & Bone Health | Last Active: 8 hours ago | Replies (1087)Comment receiving replies
Replies to "Thank you so much for posting. My Dr. is pushing hard for me to go on..."
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!
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.