Anyone taken Evenity (romosozumab) for Osteoporosis?

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.

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?

@sunny65 I sometimes get x-rays when I think I might have fractured. I have learned to wait a little and often it turns out to be muscles. But in this case yes I would get an x-ray.

Are you having massage lying down? I absolutely cannot do that. I sit! The one time I had a massage lying down I felt like I had fractured ribs as well as back!

If you feel better lying on your back it is not likely to be a fracture in my experience. In that kind of situation I use patches: lidocaine, capsaicin, menthol, whatever works for you might help.

@windyshores ,
I always appreciate your advice. My therapist does some muscle massage while I am laying on my back. It’s traveling pain and I am suspecting Evenity. Due to insurance issues I have to wait at least till January 1. The deductible on Tymlos will be two thousand next year. If I start now I have to pay another thousand and it’s not just about money. My doctor says that it might take long time to get approved in the middle and he afraid that insurance cancel coverage for Evenity and with my severe osteoporosis it would be not good. I might still ask him to switch after new year starts. Then I will be after 7 shots. I was going to do x-ray but my pain moved to lower back again and I decided to wait till beginning of December because I have an appointment for MRI. I really desperate to find something non- opioid that could help me with pain. I use 1mg clonazepam at night and this helps me to sleep through the pain. I know that only thing helps me a little bit is 5% lidocaine patches . They are prescription only and my insurance doesn’t cover it. .I have to shop around for better prices. I wish I have doctors like yours. Now I kind of working with two and neither one is worrying about me having Tymlos after Evenity. I also have nice rheumatologist but he don’t know much about Evenity. I afraid that if the sequence is wrong - it makes my bones even worse.

@windyshores ,
I always appreciate your advice. My therapist does some muscle massage while I am laying on my back. It’s traveling pain and I am suspecting Evenity. Due to insurance issues I have to wait at least till January 1. The deductible on Tymlos will be two thousand next year. If I start now I have to pay another thousand and it’s not just about money. My doctor says that it might take long time to get approved in the middle and he afraid that insurance cancel coverage for Evenity and with my severe osteoporosis it would be not good. I might still ask him to switch after new year starts. Then I will be after 7 shots. I was going to do x-ray but my pain moved to lower back again and I decided to wait till beginning of December because I have an appointment for MRI. I really desperate to find something non- opioid that could help me with pain. I use 1mg clonazepam at night and this helps me to sleep through the pain. I know that only thing helps me a little bit is 5% lidocaine patches . They are prescription only and my insurance doesn’t cover it. .I have to shop around for better prices. I wish I have doctors like yours. Now I kind of working with two and neither one is worrying about me having Tymlos after Evenity. I also have nice rheumatologist but he don’t know much about Evenity. I afraid that if the sequence is wrong - it makes my bones even worse.

@sunny65 be careful with massages lying down!! Maybe it's just me....

I also have lonazepam but I take .125mg maybe twice a week when I really cannot take it. I am afraid of dependence. The only time I get a good night's sleep is when I take it.

Someday when I am ancient (not too far to go!) I am going to ask to have it every night!

I did not have pain on Tymlos. I have had pain on Evenity and to a lesser extent, Reclast.

I stopped Evenity at 4 months because that was the anabolic (bone building) period and the rest is anti-resorptive according to my doctors and reading. So I don't see why someone could not stop early and that was something my doctor supported.

I wish we knew what happens when Tymlos is done after Evenity. There seem to be no studies. Let us know!

Hi @windyshores . I went to endocrinologist, doctor who specializes in osteoporosis and fractures and rheumatologist . Endocrinologist told me that I can use Tymlos after Evenity ( he thought that Evenity is just 2 years on market when in fact is five). I just guessed that he doesn’t prescribe this drug often maybe never. Osteoporosis specialist told me to stay on Evenity all 12 months and then switch to Tymlos) and Rheumatologist didn’t know what kind of drug Eventy was. Besides he prescribed me a few of various pain medications which are not advised to mix . My stomach can’t handle Tramadol anymore .The back pain is so intense after 6th shot. I even called Amgen today and talked to nice lady - she knew about Evenity but what drug is the best to follow with she didn’t know.
All I am reading that if someone is on Evenity and want to follow with Tymlos suppose to be at least 64 days break or go on something else like Fosomax for a while and then go on Tymlos . Not sure if this is good idea for me with my -5.1 T score. I even wrote a letter to endocrinologist to look at the sequence very carefully and advise me what to do next. I am not even sure if this goes to him or nurse. I know that I am becoming my own doctor and this is very sad. If I just was able to find something that helped me with this crazy back pain and I can do some exercises. I tried a lot of pain pills, patches, ice, heat, therapy and nothing helped. I also tried breathing exercises and pain counseling. Am I missing something?

@sunny65 Keith McCormick told me that Evenity causes joint pain in 40% of his patients. I have probably already told you that. Not sure if that applies to back.

Have you considered talking to McCormick? It does cost $350 now for the first consultation. His book does not cover transitioning from Evenity to Tymlos unfortunately. I think I mentioned before that you might get fast tracked for an appointment if you tell the receptionist your DEXA score.

I am so sorry for the frustration you are running into. Was your -5.1 before treatment (I forget)? I hope you get knowledgeable help!