← Return to Anyone taken Evenity (romosozumab) for Osteoporosis?

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@leeosteo

teb. I was diagnosed with osteoporosis in 2014 with first PCP (spine -3.5, hip -1.7). Took Alendronate for 4 yrs. Improved my diet and exercise. I went on med holiday in 2019 (spine -3.3, hip -1.5). In 2020 I changed PCPs. She was looking at possible secondary causes when she left pre pandemic on medical leave and never returned to the practice. Two of these tests (NTX and 24 hr urine calcium) came back below norm or abnormally high. No explanation of test results then pandemic hit. It wasn't until Dec 2022 that I went back to a new, third PCP and had my last DXA. Interesting my spine remained stable -3.3, hip -2.2, femoral neck -2.7 and forearm -2.4 (both femoral neck and forearm were never measured before). I do walk every day usually 3 miles. I'm also a photographer hiking all over with camera gear on my back. I've been keeping a food log recently and realized I haven't been getting enough protein and essential vitamins/minerals needed for bone remodeling. I'm guessing this is a major part of my issue. This new PCP wants to put me on Prolia indefinitely followed by Alendronate. At my request he repeated the NTX urine test which again shows below normal range again (22 in range 26-124). He tested my parathyroid and it came back normal. I'm concerned with the NTX results when he's recommending an antiresorption med. Does this mean I'm not breaking down bone fast? yet my DXA T scores have gotten worse? He admitted he's not a specialist in osteoporosis and has referred me to an endocrinologist. I just tried scheduling an appointment with the endocrinologist and the earliest I can see his recommended endo (or any other endocrinologist in this office) is August. I just left a message back with the PCP for recommendations on how to proceed forward.

In the meantime, I've re-read Dr McCormick's book and looking for any pearls of widsom. Possible consult with Dr McCormick or a osteopath/functional doctor. My husband is not a fan of either ideas. I do believe I need meds at this time. I'm just concerned how long meds can help if I don't get underneath the cause. What happens when I exhaust all med options? They do have time limits and the risks grow greater the longer you use them.

So like you, while I weed through the doctor/med issue, I'm trying to focus on those things I can control e.g., diet and exercise. That's why I've been asking so many questions re diet. Sometimes I wish I knew more in 2014 or asked different questions versus a doctor bullying me into meds right away. That's water under the bridge I guess. Just got to deal with it where I am now. And yes, my cortisol has got to be super high over the past two months. I feel like I've been going through the 7 stages of grief... (shock, denial, anger, bargaining, depression, testing, acceptance)!

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Replies to "teb. I was diagnosed with osteoporosis in 2014 with first PCP (spine -3.5, hip -1.7). Took..."

yes, those stages of grief! especially when you feel that you've worked hard to live a healthy life, paying great attention to diet and exercise. The most maddening thing is when they tell you "it's genetic". That's such a simplistic response and I don't believe it. There has to be a reason. We have to be our own detectives and advocates. It's exhausting.

When I was 57 (i'm 66 now), I opted to go for a Lifeline screening and one of the tests was an ultrasound of my heel which showed my density was borderline. I then went for a dexa and sure enough, I had osteo. I was shocked. If I had not gone for that Lifeline screening I would not have had a dexa for another 8 years and I can't imagine how bad things would have been. It's such an arbitrary age guideline set by the AMA to measure bone denisty. It's very late in the game for many of us. I think I went for the Lifeline screen as I was curious about my heart due to high cholesterol levels for decades and refusing statins all those years. My heart was fine (in fact my calcium score is 0) but my bones were not.

In the last 4 years I have moved 4 times. I have been in my current home for a few months and have been trying to line up my docs. Since I don't know many people yet, I have no one to ask for recommendations and am relying on internet reviews. It's an exhaustive process and once I find a doc, like you it will probably be months before I can get an appt and a dexa. If the numbers are bad, I may consider going back on Forteo or opting for Tymlos since it's the same mechanism and the black box warnings have been removed. (at least on Forteo but I believe Tymlos in the pipeline if not removed already). Either that or I'll increase my Estrogen level.