Anyone taken Evenity (romosozumab) for Osteoporosis?

It really is a tough decision that many of us struggle with so I completely understand your hesitation and concern.
My bone loss was all in my spine and I did not want to take medication, believing that I could improve my bone density naturally with greater attention to my health. My diet was already extremely healthy and I exercised daily but I thought I could increase my exercise and pay even greater attention to my diet to gain back some of my loss. During that time, I suffered tremendous bone loss. Biggest mistake of my life delaying medication.
We are all different but from my experience and everything I've read, you just can't build back bone after menopause without medication. I ultimately chose to go on Forteo since it predominantly builds the spine and I had some increase in density. Not as much as I had hoped but at least their was gain and not continued loss. I had no side effects. The best part of being on it was that for 2 years, I didn't think about or constantly worry about my bones. That in itself was a great relief.

teb. If I may ask. What are your T scores before and after Forteo? What other meds did you try before Forteo? Are you familiar with The Whole Body Approach to Osteroporsis by Dr Keith McCormick?

It really is a tough decision that many of us struggle with so I completely understand your hesitation and concern.
My bone loss was all in my spine and I did not want to take medication, believing that I could improve my bone density naturally with greater attention to my health. My diet was already extremely healthy and I exercised daily but I thought I could increase my exercise and pay even greater attention to my diet to gain back some of my loss. During that time, I suffered tremendous bone loss. Biggest mistake of my life delaying medication.
We are all different but from my experience and everything I've read, you just can't build back bone after menopause without medication. I ultimately chose to go on Forteo since it predominantly builds the spine and I had some increase in density. Not as much as I had hoped but at least their was gain and not continued loss. I had no side effects. The best part of being on it was that for 2 years, I didn't think about or constantly worry about my bones. That in itself was a great relief.

My T score was -2.8 before going on Forteo. In the two years that I tried to improve naturally, I went from -2.8 to -3.2 at which point I knew I had to go on meds. The first year I was on Forteo, my density reverted to -2.8. Interestingly, the second year I was on the drug, my density declined to -2.9. Had I gone on Forteo initially, my scores likely would have dropped into the osteopenia range but now I'm playing catch up. After Forteo, I decided upon HRT as the best option for maintenance. I decided on those two meds as the most "natural" approach to bone-building and maintenance as they are hormones that the body recognizes. I have not been on any other meds though I have to remain open. It has been a few years and the HRT has provided stability with even a slight gain at my last reading though you have to take that with a grain of salt as arthritis shows up as gain in bone density so it might possibly be that. There is no way of knowing for sure. I am overdue for a dexa and am a little concerned due to the stress of the last few years. I'm sure my cortisol was super high through it all and that's not good the bones! In the meantime, I do everything possible that is in my control as there is so much that is out of our control!
Yes, I am familiar with McCormick. Read his book years ago. Also Lani Simpson.
May I ask what your T scores are and what your journey has been?

It’s scary to discover that you have osteoporosis but it’s important to take strong action as soon as possible. Evenity is new so doesn’t have a long history regarding side effects. That said, though I do not like getting these monthly injections I believe that this bone building treatment is best. Also, to further help your condition severely limit alcohol intake and do daily weight bearing exercises. Good luck

betsee, what other osteoporosis meds did you try prior to Evenity?

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)!

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.