Spine Doctor and hip doctors opinion .. scared to start taking them

Daisy17, hi. One way of knowing is by the way the medications work. Most of the medications block cell that dissolve defective bone. Bisphosphonates attach to the bone preventing these osteoclastic cells from attaching causing the death. Prolia stops these cells from developing fully and Evenity blocks a protein necessary for their production. The pth 1-34 medications increase the production of both types of cells the osteoclasts that dissolve older and damaged bone and the osteoblasts the cells that produce new bone.
Then there are the warnings on all the other meds about osteonecrosis and atypical fractures. In a sense all of the clinical trials signal issues about bone quality except Forteo and Tymlos.
There are actual studies about bone quality. https://www.healio.com/news/endocrinology/20220726/2-years-of-teriparatide-restores-bone-quality-to-premenopausal-levels#:~:text=Teriparatide%20r estores%20bone%20mineral%20quality,that%20of%20healthy%20premenopausal%20women.%E2%80%9D
There are other less accessible studies, animal studies and pathological studies. https://journals.plos.org/plosone/articleid=10.1371/journal.pone.0229820
Not to obscure your point about how ephemeral these bones are. It may become more common to stay on Forteo or Tymlos now that the restrictions have been removed.

I would say it's extremely important to meet with a doctor that specializes in Osteoporosis. My mom had osteoporosis early and eventually broke 16+ bones and lost four inches of height. I wanted to avoid that fate as did my sister. We have always eaten well, made certain we had enough calcium and D, excersized including weight bearing daily, etc, etc. Had my first DEXA at 51 and my spinal T score average was -3.7 with my lowest 2 lumbars -4. Obviously, not taking medication wasn't an option. I made an appointment with a specialist, but it was several months out. In the meantime I was able to consult with a PhD who oversees many of the osteoporosis drug trails to discuss the different options, outcomes, order the drugs are taken, etc, etc. Eventually I got into the osteoporosis specialist doc. He did note that genetics can be a bitch. After much testing to rule out any other causes, checking my kidneys, etc, etc we discussed options. Eventually decided on going onto an anabolic bone building medication to help "build up my bones" before I would switch to more of a maintenance drug such as a bisphosphonate. I used Tymlos for two years (daily injection, it's very simply like an insulin pen). I had a 16% BMD increase in the first year and about 4% in the second year. I then had an annual Reclast infusion to "lock in the gains". I will have two more annual infusions and then go off drugs for a few years since Reclast remains in the system for several years. Once it starts to decline (will have bone marker testing done to determine when that is occurring), we will discuss next steps in the process. Osteoporosis is a long term condition and the order you take the drugs and for how long is extremely important (an anabolic isn't as effective if a bisphosphonate is taken beforehand, for example). Most of the osteoporosis drugs have a limit to how long they are recommended to take, so planning ahead with someone who specializes is important. I was terrified to start the drugs after reading the forums, but I'm glad I did as not doing so would mean a certain future of broken bones. My mom has now been on Prolia for 7 years and is back to dancing and living life in her 80's. My sister started on bisphosphonates in her 40's so she was able to stop her loss before it was as severe. She's now on a "drug holiday" and will resume when her markers indicate it's time (likely 3-5 years). I would note when I recently had shoulder surgery the surgeon noted "why not just do weight bearing exercises" when I mentioned I had osteoporosis, not helpful. Again, I had exercised daily, wear a weighted vest, had always done weight bearing exercises as recommended to prevent bone loss, practice martial arts, ski, hike regularly, etc, etc. Sometimes medications are needed or you just continue to lose bone density. Had I caught mine earlier, HRT might have slowed my loss, but I didn't, so here I am now treating it as best I can. Unfortunately, my doc is now retiring so I am in search of another specialist in the Seattle area (which isn't easy to find, but worth waiting for). Luckily I already know the plan for the next several years. Many of the drugs available today didn't exist 20 years ago, so at least we have so many more options now with more on the horizon. Good luck with your journey. Ask a lot of questions when you meet with them.

Diana: My mother had osteoporosis and would break bones just turning around on a barstool. I am taller and slim built like my mom, but my sister is built like my dad, more stocky. We both have osteoporosis. A rheumatologist I saw said the disease has a definite genetic component. I wonder what blood work your endocrinologist is doing that would further look into a cause.

Thank you for this article. It is a good summary of what is needed. I can confirm that an exercise program can stop or slow osteoporosis. Every one of my dexa scans for the last 8 years got worse and worse. In 2023 I started a strength and jumping program I pieced together from various sources, e.g. Margret Martin @ Melio Guide. After two years of consistently lifting, jumping, increased protein and eating prunes my last dexa scan plateaued. It didn't get better but it didn't get worse. As Margret Martin says "Maintaining is gaining".