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Anyone taken Evenity (romosozumab) for Osteoporosis?
Has anyone taken Evenity? I understand it’s only been on the market for a little over a year. I’m hoping it will help with my severe osteoporosis. Any information is helpful.
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Hello @jdshep , thank you for writing to me. My pain is kind of “ traveling” through all my back. Yesterday was in thoracic area- it felt like fracture, today went to my low back. I started to have a lower back pain back in April. It has been always in lower back. But when I startedEvenity in July - it became much worse. I only have pain in the spine and around rib cage. Always feels worse after injection. I talk to a couple endocrinologists about switching to Tymlos but they don’t think insurance is going to approve and they both advised me to finish all 12 injections. I am not sure if Tymlos would be different and wasn’t sure if this is right sequence after Evenity. They both said that my bone density is so bad that I must go on another bone builder right after finish Evenity. It’s very confusing. If I don’t have an excruciating pain , I could look for another doctor, but the pain is so intense that I can’t go and look for another doctor. Surgery is not an option for me.
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!
@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.
@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!
As a person who has alot of fractures seen on MRI's cat scan and xrays I am up to 5 poss. 6 vertebrae. I am so sorry ppl have to deal with pain and then here comes the big pharma bill for the bone building drugs it stinks. I wish you the best ev1 in pain out there dealing with this . I am 67 and now a homebody until my fx's heal and my Forteo 5 weeks kicks in and helps. Good luck and ppl have to pay alot of money for meds makes it worse.
sorry clonazepam!