Does the anxiety or fear of this prognosis ever get better?

@daisy17 I was a copy editor on a prominent medical journal for 14 years. It was drummed into us that results presented solely as percentages, as in the example you gave above, were meaningless. If doctors recommending osteoporosis medication are presenting the odds to patients in this manner, they're doing so either out of ignorance or deceptiveness.

@junesiegel I agree that the appellation of "disease" is misleading. Disease connotes abnormality, but if one of every three postmenopausal women is being "diagnosed" with osteoporosis, the finding of low bone density would appear to be normal--or at minimum, a common condition vs a disease. The rationale for calling it a disease seems clearly linked to setting the stage for prescribing meds.

@otherside

I have never heard a doctor or my functional medicine provider call it a disease. Sometimes I wonder if patients who cannot accept that our bodies break down and at some time we die. There is such a strong denial of aging and death in this culture.

I found the book "Great Bones" by Keith McCormick to be very informative.

Without getting into a long drawn out story, my last Dexa scan showed a significant deterioration in just 2 yrs. I had failed to tolerate a bisphosphonate so I was open to stepping up to another medication. I saw my elderly mother sustain multiple fractures during the last 10 years of her life including a severe vertebral fracture that caused her to need narcotics. I don't want that for myself.

I made peace with the idea that I have to do what I have to do right now to protect my bones REGARDLESS of a preference to avoid medications. It is what it is, as they say. I'm almost 70. If I were in my 50s with osteopenia, I would be proactive with supplements and maybe HRT. But right now I do not have the luxury of "experimenting" with this or that supplement while my bones are significantly deteriorating. Am I going to wait yet another 2 yrs for the next scan to show me even more deterioration? Perhaps have a fracture in the meantime?

My PCP recommended a rheumatologist rather than an endocrinologist. I'm not really sure which one is "better" for osteoporosis. My rheumatologist did a workup and started me on Evenity. I decided I'm going to trust her. I have peace about my decision, I'm not going to be anxious about this. I'm being given a chance to rebuild my bones while still young and hopefully will not have to live out my 80s-90s with pain and physical dysfunction.

Medications all involve risks vs benefits and it's a personal decision. For me, the benefits of Evenity outweigh the risks.

@followheart87

I appreciate this. I handled quite similarly. My sister in laws mother spent years in bed and in agony with multiple fractures and of course fragility.

@kfhoz I found an endocrinologist who understood how active I am. At first, she wanted to follow textbook recommendations, but I told her I am an avid downhill skier, who skiis off-piste in the glades and cliffs in British Columbia and I had no intention of stopping. She said …. Oh my, we do need to build your bones then:)

You have to advocate for yourself …. and be prepared to pay out-of-pocket if necessary. I told her many people spend money to renovate their kitchen, why wouldn’t I spend money to renovate my skeleton. Luckily, she was still able to help me get it funded.

Thank you for the information on following with Evenity, but I’m happy with the normal sequence of teraparatide followed by zoldronic acid. I responded well, so I don’t feel the need to add another layer of drugs into my system, at this point … if Evenity is conclusively proven not to affect the heart, then I may consider it if I cannot maintain my current numbers with heavy weightlifting, nutrition and supplements:)

Good luck in your journey. This forum is the best. I learned so much from so many people and I very grateful for the opportunity to share experiences. Reach out anytime:)

@lynn59 Thanks, very helpful! Yes I am totally in with your take on self-pay for health things. Love your kitchen remodeling comparison

My doctor prescribed Evenity due to my severe osteoporosis. She told me that if my Dexa scan results showed mild or even moderate osteoporosis, her treatment decision would have been different.

I'm pretty sure Evenity isn't prescribed for someone with mild or maybe even moderate osteoporosis. You can't just "choose" to go on Evenity yourself. There are criteria for going on it. The insurance company won't approve it otherwise. I understand it's like $4000 per injection out of pocket. I don't pay this, however.

I was told I have "end stage osteoporosis". For me, it's too late for nutrition, supplements and weights. In fact, I already did all of those things through most of my life. I can't rely on "maintenance" drugs at this point because my spine is already too deteriorated. I need a bone rebuilding drug.

I understand Evenity is like a game changer. Yes, there's a risk of heart attack and stroke. I had to get a cardiac screening before going on it. I'm willing to take such a risk.

Like I said, Evenity isn't prescribed for someone with mild osteoporosis nor even moderate. There are other drugs in the pipeline. It's for someone with severe osteoporosis.

I understand people are more autonomous today and make their own decisions about their health problems but osteoporosis is one of those conditions that is not monitored very often like cholesterol so you cannot know for sure if your lifestyle is helping it or not. One can experiment with supplements and nutrition and get their own cholesterol tests to see how their dietary changes helped their cholesterol. One can't do that with osteoporosis. It's 2 years to wait for the next Dexa scan and by then, your bones could be even more deteriorated.

In 2023 my Dexa scan showed mild osteoporosis so I went on a bisphosphonate and couldn't tolerate it after 4 months. I went off it and focused on nutrition, supplements and weights. This turned out to be the wrong decision for me. I wasted almost 2 years taking matters into my own hands rather than seeking professional recommendations. I should have seen Rheumatology after going off the bisphosphonate. Perhaps I would have been started on the next level of medication. I regret that I didn't look into it. I was complacent. Now I have severe osteoporosis.

Everyone is different. My friend has only mild osteoporosis and is focused on nutrition, supplements and exercise and it sounds like her tests have been stable. That wasn't the case for me.

@lynn59 Txs for your comments. I too am very active and developing fear to be active but need it mentally too. I want to supplement but not sure what to take. My doc says they don’t help with fractures but I feel like it’s good for bone health in general. What do you take?