Anyone taken Evenity (romosozumab) for Osteoporosis?

Hi, It took several months to have more mobility but I am still dealing with muscle aches but may be from Actonel. It is much much better than when I was on Evenity. I had no idea the bone building effects were in the first 6 months or I would have quit. I was fine on Evenity for 5-6 months and then the pain all started and just kept getting worse. I am thinking I may be one of those people who gets muscle aches/stiffness/pain from antiresorptive meds. Never had an ache or pain prior to meds.

Unfortunately there’s not enough data…. However it does disclose that it causes Osteonecrosis on the jaw

I’m sorry be careful I had a horrible experience with Evenity I wish I hadn’t use it. Now I have Osteonecrosis and worse Osteoporosis

cuzco1968, I haven't experience, but want to thank you for posting this caution. This extreme adverse event hasn't been well explored in the medical literature.
Forteo is often used for osteonecrosis both of the jaw and the hip because it speeds healing and strenghtens the bone. What will you do now? You have to be so careful to avoid fracture.
Clearly the prescriber had no idea. Thank goodness you trusted yourself and sought another opinion.
Was the determination made through imaging.

@cuzco1968 what were/are your DEXA scores? Paradoxically osteoporosis itself can cause necrosis. It is important for us to understand if this was caused by Evenity or had already been developing. If Evenity, necrosis in the hips should be added to side effects via Medwatch.

This is clearly a very rare occurrence since it has not shown up in testing or on the market so far, unless it has been reported and not yet added to side effects. Jaw necrosis usually takes a long time to develop (after 3-5 years of bisphosphonates) and I was told it is mostly from high dose bisphosphonate use in cancer.

I would like to know how the mechanism of Evenity in those first few months, when it is mainly anabolic, could cause this. Evenity does lower CTX. Its potency comes from being the only medicine that both raises P1NP (growth) and lowers CTX (resorption). But I was told it is a pretty weak anti-resorptive.

If it is from Evenity and you are a rare exception, it is truly heartbreaking to read about your suffering. In fact, regardless of cause, it is heartbreaking and I hope you can recover.

I am going on year 5 of forteo (which was chosen as the best by Stanford osteoporosis doctors). I took oral bisphosphonates for 2 years with horrible repercussions of the jaw (two surgeries so far). forteo is approved for 4 years tho some doctors stop at 2. I have no alternatives at this point and will be testing what happens when one continues forteo beyond....

@magwil101 I have never heard of anyone doing Forteo that long. That is encouraging for all of us. Do you know if it is still working (bone markers, DEXA).

Yes still working but the FDA hasn't approved it yet. I am a candidate because I have no alternatives at this time. I am hoping there will be some new medicine in the future for people to try. Not sure anyone else should consider a 5th year until it is approved.