Younger than usual with severe osteoporosis

Hi , I too am 50 and was recently diagnosed with severe osteoporosis a few weeks ago. My scores are very similar to yours (spine -3.6, fem neck -3.5, total hip -2.9). I am also thin and petite but have always exercised, kept a healthy, mostly organic diet, and supplemented with calcium and Vit D (since I do not eat dairy). I was very surprised to have such low numbers at this age with all the steps that I have taken to try to avoid it. My mom was diagnosed in her late 50's and is now 79. She was never comfortable with meds and unfortunately has progressed, suffering from fractures of the spine. Clearly for me there is a genetic component, since I have been incorporating many of the recommendations since I have been in my 30's. It sounds like Forteo might be best for me.

I just wanted to thank you all for your posts! It is a lot to absorb in the beginning and I have already learned so much here! Wishing you all good health !

Hi @mdg22,

I genuinely empathize with the shock you experienced when you were told you have severe OP. It's scary especially when we (fingers crossed) have so many years ahead of us.

What led to you having a DEXA scan?

Did you have a fragility fracture? The pain I experienced with mine was on the level of childbirth.
I'm sorry to hear that your mother suffers with fractures. When she was diagnosed some 20 years ago, treatments options were limited, and HRTs were being demonized. Even if she'd accepted one of the drugs available then, she may have ended up in the same situation. Those of us with severe OP now have a fighting chance of avoiding your mother's fate. Not only do we have anabolic medications, we also know far more about what diet and exercises are good for bone health. We both can, and, I'm sure, will continue using natural approaches alongside drugs. My goal is to improve my natural bone metabolism enough while on OP drugs that I can eventually stop taking them all together.

Our stories are nearly identical, and there are a surprising number of others like us. It makes me wonder--If 'early' OP has been a thing for a long time, and just not being diagnosed, or is OP affecting women earlier for some reason?

The Dr. Doug video I shared in my last comment references a retroactive study gathering statistics from real life fragility fractures and diagnoses prior to regular screening at 65. The study is designed to be used, in part, by insurance companies. Hopefully, they will read it and see the value of early detection. DEXAs are relatively cheap. It would be to their advantage if patients are diagnosed before their T-scores reach the severe range.

It's great that you found this group and you're quickly educating yourself on the best treatment sequence. Forteo or Tymlos are both excellent options provided your insurance will cover them. Evenity works faster. It's possible to do one after the other. If you go that route, it's supposedly most effective to do Evenity after one of the others. It includes anti-resorption which can blunt the benefits if followed by Forteo or Tymlos which, to my understanding, are purely anabolic. @windyshores did Tymlos and then started Evenity. If you haven't already read about her journey, it's worth doing so. We're fortunate to be able to learn from the experiences of others.

I look forward to hearing more about your bone health journey over time.

I wish you health and happiness,
@hopefullibrarian

Hi @hopefullibrarian,

It is so nice to connect with you! I actually had been asking my doctor about scheduling my first DEXA for a few years now. I was concerned because of my mom's history. At the time, he had explained that it would be more informative if I waited until a year after menopause. In hindsight I should have just paid for it out of pocket. But he felt that having one at 50 was still considered earlier than usual. And with my low numbers, I clearly had low BMD even in my 40's when I still had estrogen. I do not believe I have ever had a fragility fracture (knock on wood!). But I recently had an x-ray of my spine, which I am waiting on results, because my primary doc detected scoliosis during my last check-up. So maybe that would show if I have had a fracture. I do often get muscle spasms and mid back pain...but have had that on and off since my mid 20's.

I'm sorry to hear that you have had a fracture. How are you feeling now? Are you still on Prolia? What has your experience been like on it? I have a Rheumatologist appointment for the end of June. I am going to to take this time to learn more so that I am prepared for that appointment. . I don't like to take meds for anything unless I really have to. But at our age and in our situation, there doesn't seem to be much choice. I completely agree with trying to do as much as you can naturally in hopes to strengthen and maintain bone. It is empowering to know that there are steps we can take to help our body along in this process. Do you follow any type of exercise plan? I watch Dr. Doug as well! There are so many great videos on YouTube! But it is so hard to know what can be helpful and what can possibly be harmful. Have you heard about vibration therapy? That looks promising....

Looking forward to chatting more...Wishing you well!

@mdg224, You were far ahead of the curve and being proactive about your bone health when you started asking about getting a DEXA. Because your doctor actively delayed ordering your first DEXA, I'm curious to know what he had to say when you got the results.

My compression fracture left me with a permanent deformity. I still suffer with pain, though it's bearable. I'm currently doing my third round of physical therapy. Maybe the third time will be the charm.

I'm not on Prolia anymore. I'd only had one injection, and was just about to get a second when this support group popped up in a web search. All that I’ve learned since then led me to switch to Evenity. I've had four sets of injections. So far, it's going well--only some minor short-lived side effects. Last month, I had bone turnover markers tested, and my P1NP went from an 11 to 102.

For exercise, I do Dr. Lauren Fishman's 12 poses for osteoporosis, lots of walking, wall push-ups, yoga, stomping, heal drops, and squats. If the Onero program were available where I live, I'd sign up.

As you said, it's "so hard to know what can be helpful and what can possibly be harmful." From everything I’ve read, vibration therapy is safe if used correctly. Even if it doesn’t help your bones, I haven’t found anything that says it harms them. The best plates are expensive. If I could afford it, I would add it to my regimen. Have you had the opportunity to read what other forum members are saying about it? There's a conversation on the subject, that you may find informative: https://connect.mayoclinic.org/discussion/whole-body-vibration-for-osteoporosis/

Good luck with your appointment with the Rheumatologist. Definitely learn all that you can beforehand. I felt like I was cramming for a test before I saw my Endocrinologist, but it was worth it. I got so much more out of the conversation for it.

I’m 56 years old, I paid for a DEXA, spine -3.7, hips -2.8. No fractures or pain, just had a feeling something was amiss.
I’m through menopause, but I have now started bio identical hormone therapy to help build bone for the next five years. Estradiol and progesterone. I’ve always exercised and had a healthy diet. I’ve started weight training more seriously, tweaked my diet and supplements. I panicked when I first got the diagnosis in November and had a Reclast infusion. That was fine, no side effects. I plan to have a REMS scan to find out if my bones are considered strong or not.
There is SO much to learn, it takes a while to find your path but you will. I like Dr. Doug Lucas (YouTube) and my naturopath doctor at home.
Stay strong! 🙂 💪

@andreamayo, Thank you for sharing that. You're very in tune with your body, and that may have saved you from fractures and pain. Please share the results of your REMS scan when you get it.

I am 73 with DEXA scores similar to yours, and am also thin and petite. Have you made a decision on which drug you will start taking? I'm still doing research and trying to decide what to do.

I have found there is a huge difference in the ability of an individual med practice vs a university hospital clinic in obtaining insurance approval quickly and with ease.

I'm in my 70's, osteopenia and osteoporosis diagnosed a few years ago. And I too am short and petite! I choose not to use the drugs and instead have used Algaecal (not with Strontium) as it is calcium that comes from a food source, vitamin D3, Ultra K2-7 + D3, Living Bone and Bone & Marrow - 2 supplements from Ancestral Supplements, use ankle weights for some exercises, walk, play tennis and stand as much as I can instead of sitting. My last Dexa in 12/23 showed no significant increases - I stayed were I was a year ago and I consider that a win. I will continue with what I'm doing until I have another Dexa. At this point with all my supplements there is no way of knowing which is helping and which isn't worth it. So it's costly but at this point, my goal is stay active.
Best to all of you!

Hi @elisabeth007, My prior auth that was denied was submitted by my Orthopedic surgeon at a rural clinic. Now I'm also consulting an Endocrinologist at a huge university clinic. She told me not to worry if my treatment gets denied on the first try, because all she would need to do is call them and sort it out.