Anyone taken Evenity (romosozumab) for Osteoporosis?

I just learned that forteo no longer carries a black box warning since it has not been determined that there is an increased risk of osteosarcoma associated with its use which was a previous concern. They have also removed the 2 year lifetime max of usage which is also reassuring. Tymlos is a newer drug and it works similarly. Tymlos does not need to be refrigerated which may be of benefit for those that travel a lot. Might be worth exploring both of these options to see if one might suit you better than the other (or another med that you feel more comfortable with). Wishing you the best of luck in this difficult decision and I hope that whichever way you go, you feel reassured and achieve the results you are looking for.

Yes I am on Evenity. I received my 8th set last week. My doctor told me I needed to stay on it for one year but others have reported that they received the injections for up to 18 months. I'm 71 so it's hard to see if my aches and pains are aging joints and osteoarthritis or side effects. I think I'm fine and my only real health issue is my osteoporosis. So, I'm going to continue the treatment.

In response to your concern on starting on Evenity, it is a very tough decision. I feel some MD's are quick to put you it because it is the newest medication out there for Osteoporosis. You need to do your own research regarding all the medications available. As I have said in other posts, you need to be well educated on this condition. I agree that you might want to try a conservative approach first: increasing your Calcium, Vitamin D ( depending on your lab results) doing weight bearing exercises to see if that helps your DEXA numbers before starting on any medication. Have you thought about getting a second MD's opinion? Everyone reacts to medications differently, I wish you well in your journey. I had my first set of Evenity injections yesterday.... so far so good just minor side effects that I can live with. For me I had no other option.

Thanks for sharing your story. Did you try more conservation interventions prior to taking Evenity? I have asked two other doctor friends their opinions and as so often happens, one said "definitely do" and the other said "wait." So back to square one!! I do have an appointment with a new doctor the end of March so think I will wait until that appointment and see what she recommends. She is a gerontologist.

Thanks again for sharing your experience. I really appreciate it.

I am 71 as well and hope to live many more years so maybe taking the Evenity makes sense for future health. I have an appointment with a new doctor the end of March and depending on what she recommends, I might go ahead and take the Evenity. Thanks for sharing your experience. It is hopeful that you have not had any side effects, or at least major ones. Best

I was on 4 different medications when I was first diagnosed at age 50. Unfortunately I did not have any improvement with my DEXA numbers ( which is VERY unusual). I did take a 6 year break from medication since there was nothing left to offer me. I have been to 2 Rheumatologists because my latest DEXA scan was getting worse ( it had been stable) and they both said I need to be on Evenity. During those 6 years I took a low dose Estrogen pill, walked 5-6 times a week and took vitamins and supplements( which I still do now). On this difficult journey you need to have a good MD that will help guide and support your decision.

Wow, that is quite a journey; you were very young when diagnosed with osteoporosis. You sound like you have a great attitude which really helps. I will keep you posted on what I end up doing. Right now, waiting for doctor appointment March 28 and in the meantime, will keep doing all the right things, even giving up wine which I dearly miss!! Best to you.

Hello all. I posted recently how difficult it was for me also to decide to start medication, I agree with teb, "biggest mistake of my life delaying medication." By the time I got around to making the decision (delayed for a year, hoping to find the "perfect approach"), my bone density dropped to -5.2,-5.1 and -4.7 big mistake! On February 1. 2023, I had my first set of Evenity shots and thankfully did not have any problems. That said, just yesterday I noticed a rash on my forearms but I don't think it's from the meds and no other associated serious issues that might happen with rash.
I also found it a great relief to have made the decision, could actually sleep! My endocrinologist believes in Evenity for me, and I'm looking forward to my next shots on March 1. I'm trying to improve my diet and exercise on a more regular basis. For help in this tough decision, check out Margret Martin's interview with Janet Rubin, MD endocrinologist and professor at University of North Carolina, regarding Evenity. Good luck and remember we're all in this together. Kolika

Best to you too, and to all others who post on this site. We all have journeys which need to be shared to help each other. Education and support are vital for this diagnosis. I still have a glass of wine once a week 🙂

I am 54 and have a -3.4 T score in spine. I exercise, eat right etc. I am thinking the best route for me is hormone replacement therapy. I had no periods most of my life due to being on birth control pill.