Younger than usual with severe osteoporosis

I had approximately the same scores at almost the same age, which was the first time I had a DEXA scan so I don't know for how long they had been that low. I decided not to start medications; it was agreed that only Forteo would help, and it was new. I had never had a fracture and at age 73 still haven't. My scores stayed about the same for a little more than 10 years, but then I started taking medications that might have further impaired my bone density. My scores are now -3.3 and -3.7 for my hip, -5.1 for my wrist, and 4.9 for my lumbar spine. However, I am using Tymlos now because I need a hip replacement and that can be complicated with brittle, weak bones. My experience may not apply at all to you, and I have not had a serious fall, which could have changed everything. Your mileage may vary, but I don't think that you are doomed. Good luck.

Thank you for your story. As you say, mileage may vary. It's fantastic to know that you have been able to keep the bone loss down for most of those years. That helps me to feel less "doomed". I noticed on this forum that several people have mentioned using Tymlos. I don't know much about it, and you've got me curious, so I'll do a little research. I hope all goes smoothly with your hip replacement.

Thank you. Let's both try to religiously follow the rule against falling and again, good luck.

Good evening @hopefullibrarian, I couldn't pass by your comment about Tymlos. And so, I will just share that I completed two years of Tymlos in 2021 without any side effects or problems. My DEXA scores have improved and I am now keeping everything happy with a weekly alendronate pill which has locked in the results. The other one to look at for building bone is Evenity. It is the newest injection option and has a reputation for being the fastest bone builder. It also has some ability to protect the newly created bone.

Good luck with your research. Don't hesitate to make inquiries as you move along.

Chris

Oops.....I almost forgot to share another feature of Tymlos that can be very helpful. The injection needle has several levels so that you can start at an easy level of 2 or 3 and work up to 7 or 8. @windyshores may be able to explain the "clicks" and their meaning better than I can. It wasn't available when I was on the medication.

Good night again.
Chris

I’ve been riding on another forum here for two hours, and I need to go to bed. But I will respond to you soon.

I was diagnosed at 54 yo with a spine of -3.6, hips -1.1. It was determined it was due to celiac disease.

I'm sorry to hear that. It's not as if having celiac disease isn't enough on it's own. There seem to be several conditions and medications that can cause bone loss, many because they impact the ability to create and/or absorb nutrients. It has an unfortunate flow on effect.

My spinal fracture happened during a seizure (no fall or impact was involved). The fracture puzzled doctors who weren't considering osteoporosis because of my age. Afterward, I was prescribed an antiepilectic drug (AED) which unfortunately causes bone loss. This likely compounded the problem. According to the National Library of Medicine, "AEDs ... may cause increased conversion of vitamin D to polar inactive metabolites in the liver microsomes, reducing bioavailable vitamin D (23,39). Decreased biologically active vitamin D leads to decreased absorption of calcium in the gut..."

Hi @hopefullibrarian. I wanted to say a few things yesterday, and oops, it all got wiped out😳! I gave up for the evening. Please read the threads in here on osteoporosis. Don't just go by the headings bc there are nuggets in every conversation that are useful. Drs, insurance companies, even pharmacies will try and dictate what's best for your young life. They do not always get it right. Yet there are some in the medical field, that have invested their heart & soul into learning abt this disease, and might just take a different approach to Prolia at such a young age. I would recommend Dr Keith McCormick's new book, "Great Bones." Be sure to go right to his chapter on medications, it's not too late. He talks abt sequential therapy as one of the most important things. Also, specific testing is very important before, during, and after.

My experience was similar to yours with my long awaited physician. I was handed a list of meds, told to read abt them, increase calcium, exercise, and see you next year! Very difficult to get best care on this disease. It' s way to important to not discuss the short- and long-term objectives of suggested treatments. Dr McCormick is well aware insurance companies will deny you an anabolic first, he says, "fight for what's best for YOU!"

Just passing on a little of what I've learned and Wishing you the Best.❤️

Thank you so much for taking the time to offer guidance. As a librarian, it should be easy enough to get my hands on Dr. McCormick's book. I'll also do a deeper dive into the threads on here. All the best to you as well.