Anyone taken Evenity (romosozumab) for Osteoporosis?

I'm not taking any meds (yet?) for bones and hope to stay in mild ostropenialand or improve bones with the usual recommendations. But, for people taking these drugs, please make sure to find out whether you should, or should not, take supplemental calcium. Some recommend it, a few prohibit it. Hyper- or hypocalciumia can result if one is underinformed.

For what it's worth, my PCP doesn't like any vaccines taken within fewer than 14 days of another one. To me, this is nicely conservative. That way, if one has some reaction, it's easier to suspect what likely triggered it. Conceptually, a vaccine is a kind of mild insult to the body so keeping (triggering of immune system, about which we've all read in cytokine storm covid reports) so doing the least at any one time makes sense to me at least.

I have osteoporosis and have had 3 Prolia shots. I have had 3 spinal compression fractures. Evenity has been recommended to me. However I had a stroke in my occipital lobe 4 years ago. Has anyone been taking Evenity?

Hello @reb1946 and welcome to Mayo Clinic Connect. I can understand you want to hear from others who have taken Evenity. On Mayo Connect there is a discussion from members using Evenity. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/evenity-osteoporosis/.

This will introduce you to those who have used (or considered) using this med to treat bone loss. If you want to ask a question of anyone in the group, just click on reply and you can ask questions or get more information.

I see that you have taken Prolia. Did you stop taking that because of the stroke in your occipital lobe or is the Prolia just not working well for your bone loss?

It might be good to know what caused your stroke.
You could look into using Tymlos or Forteo instead of Evenity for growing bone. They do not have the black box warning for cardiovascular/stroke.

I use Tymlos because the dose is adjustable and I ramped it up slowly. If you are sensitive to meds, that might be a good choice for you.

Evenity is the newest med. It grows bone but also suppresses resorption, but to a lesser degree than Prolia or biphoshonates. Tymlos and Forteo grown bone but do not suppress resorption/turnover.

@windyshores
Thanks for the additional information for @reb1946 about Tymlos and Forteo. You mentioned that Tymlos could be ramped up slowly. How often do you take it and how did you ramp up?

It is a daily injection. Tymlos (unlike Forteo) has clicks on the injection pen. Full dose is 8 clicks. My initial attempt to take it landed me in the ER. I met with docs about Tymlos versus Evenity given my sensitivity, and decided, with my doc, to try Tymlos and ramp up. I started with two clicks, and stayed on each level of clicks for a week or two- more time as I moved up. I have been on 7 clicks consistently now, for a few months. My doc is thrilled, even at 6 clicks. I still have significant side effects at full dose of 8 clicks, strange as that sounds when 7 is fine and the difference is so small. My body must have some kind of threshold for tolerability!

I appreciate you sharing your experiences.

Hi @reb1946, just a heads up that I moved your post to a like conversation so you can connect with the different members who are going through similar problems.

Heads up, for anyone who has taken Prolia (denosumab) already, the study below concluded that Evenity (by the same manufacturer that created Prolia, just saying) does not prevent the fractures and loss of bone density that discontinuing Prolia actually causes. Is it just me or does this sound like a slippery slope?

By the way, the Federal registry of bad side effects not listed in the drug manufacturers legally-required package insert (though Pfizer didn't provide one with its mRNA covid 'vax' which is ponderable) is the FAERS website.

Prolia has been on the market fewer than 15 years but has over 117,00 adverse effects listed, over 60,000 in a 2-year period. An FDA notice linked through the FAERS website, dated December, 2020, notes the FDA is seeking a regulatory investigation into Prolia linked to hypersensitive vasculitis. Prolia has, since being approved and thought not to cause osteonecrosis, has since been linked to, well, ostenecrosis.

I'm trying to decide what drugs to take in the event that mild osteopenia progresses to osteoporosis and, honestly, the drug choices look like a field of 'unintended consequences' (aka landmines) so am hoping that decent diet, exercise and, most important really, lucky genetics help stay the course.

It's clear that some drug choices for osteoporosis can limit later drug choices for the same condition so it looks to like people have to be able to plan a possible multi-decade treatment program in advance with insufficient currently-available data. Which might preclude better choices later as new treatments become available. If I'm wrong in that analysis, I'd be happy to be corrected.