Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.
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I had taken Reclast before without any reaction so I thought it would be ok.
Post how the actonel works out for you.
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I will post about Actonel when it's been a bit. I haven't taken it yet as I cannot get this hip pain to go away. It was minimal after being off Evenity for several months but Fosomax has put me right back into hip pain that I never had before starting Evenity. I haven't change my diet or exercise routine as I was doing what I was supposed to be doing prior to Evenity. Did your pain go away after stopping meds?
I definitely want to hear about Actonel! I am scheduling Reclast at a 20% dose. My doctors are nervous. If I cannot tolerate Reclast I will have to try an oral. I have done two years of Tymlos and need to stop.
@vrgarden Have you had any other adverse reactions? I'm nervous about starting Evenity. (Doc prescribed and insurance approved.) I'm reading such awful stories about side effects.
I posted earlier but be aware the most bone building effects are in the first 6 months of Evenity. Other than sore arms for a few days I was fine the first 6-7 months but then had to quit at 11 months as I couldn't move easily due to muscle/bone pain especially in my hips where I experienced almost no gain. It almost completely resolved after being off Evenity for about 6 months but a few months on Fosomax and the muscle/joint pain is back in my hips. Am switching to Actonel this month. I wouldn't hesitate to stop after 6 months and switch to something else if I did it again. Just listen to your body! Hope it goes well!
Unfortunately you and I seem to be among the very, very few people who seem to have more of a reaction to the drug. I noticed while being on Evenity, though the pain in my hands increased with each dose after month 5, the pain did decrease until the next dose. The half-life of Evenity is 12 days so each 12 days the amount of Evenity in your system should decrease by half; 50%, 25%, 12.5% etc. So I would say that after discontinuing Evenity the pain was getting better but I took Reclast 6 weeks after dose 9 so it's hard to say if I had waited longer the pain would have gotten even better. I seem to recall that some people on this forum said that any pain they were having decreased or went away with time. The bottom line is everyone has different reactions and the vast majority have no problems at all.
From what I've read I got the impression that when you stop the drugs joint pain or any adverse reactions decrease/go away but will return when you take the medication again. Of course, I haven't been able to find or figure out when the adverse reactions actually go away.
Thank you for posting. We do seem to be the few who have this issue. I’m sorry you are having this issue as well and we just have to keep moving and try to find something that helps without adverse reactions. I’m 67 and refuse to give up the physical activities I love and are good for me! Hopefully the Actonel will work and as I said I’ll post after I try it. I can’t even get in and out of the car without discomfort at the moment🙃
I have been taking Evenity for seven months now and have had no side effects other than twice, mild discomfort for a few hours at injection site. I get injections in belly recommended by the nurse who shared most of her patients do better with belly vs arm.
I have worn my doctor down and am now going to consider Evenity after Tylos (then Reclast). He actually likes the way I try to customize treatment. I would love to read about anyone's experience with this sequence!
Hi, I’m interested in your reasoning… I follow you on other threads and your research and wisdom are solid.
hi @anjalima. I originally chose Tymlos with the idea that I could follow it with Evenity, but not the other way around. Then was surprised that all my docs declined to prescribe Evenity after Tymlos due to lack of data.
I had excellent gains in spine on Tymlos (20%, from severe to borderline) and good results in femur neck (9%) but it is still -3.6 (from -4.1 before). Evenity would further improve my scores and is better than Tymlos for hip, I have read.
I talked with Keith McCormick today as another opinion and he said "we have to get you out of the woods so you don't fracture again." I have 7 spinal fractures, half of them clearly osteoporotic and half from a traumatic fall in 2006.
I am nervous about Evenity and joint pain especially in my spine/back/shoulder/neck. McCormick said 40% of his patients report joint pain. And nervous about kidneys with Reclast, with a nephrologist who is scary on the topic. I sure don't want to lose gains from Tymlos and would prefer to gain more!
One interesting fact: many meds need to be spaced at least a week or two from vaccines….
I have been having increased afib. I had it today with a heart rate of 194. My spine is shortened and when I lift things, my innards seem to shift around and pressure my heart. That's how it feels. Even worse if I eat after lifting. Fractures cause pain and disability but this is an example of another problem: less room inside your torso!
Windyshores thank you. Interesting path re: BMD. I do hope you get the Afib under control and gain back more bone density. Your research and knowledge is impressive.
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