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.

Hi @windyshores ,
I have questions for you. I know that you had a lot of fractures and understand this better than me. Suddenly I developed the worst pain in my thoracic spine. It’s radiating to both sides. Just below my ribs. I am not sure if I got fracture during my therapy which was last Monday. Or this is related to my 6th Evenity shot which I had yesterday. My therapist is very knowledgeable but he is using a lot of manuał work on my back. The pain didn’t started right after therapy. That’s why I am so confused.My density is very bad. I had one old fracture in my thoracic area it wasn’t painful and this hurts so bad . Tramadol doesn’t help at all. The pain subsides when I laying on my back. Or maybe this is from Evenity shots which was very painful and doctor decided not to switch right now to Tymlos because of insurance issues. I probably should go somewhere and do x- ray . I also have MRI scheduled for beginning of December. Any advice?

I have had hx of 2 thoracic back surgeries the last due to a fx. I started Evenity 3/24 due to my density getting worse and increase in Fx. After my 6 th injection I began having s/e. First dizzy then pain in thoracic area left leg/hip, left arm (hx of tendon tear). I am now walking with a cane and have cervical stenosis and left arm tears. I am looking at 2 more surgeries after I finish my evenity. I was told since I had para-thyroid disease the only medicartion I could take was reclast (did not work) or Evenity. If i can make it to February I hope all gets better.