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@sudsie58

My endocrinologists, the first one who retired after I had been going to him for a couple of years, and the second one who took over my care, ended up keeping me on Forteo for nearly 4 years. I never noticed any side effects, but my bone density as measured by DEXA scans, never improved as much as we hoped it would. Never went out of the osteoporosis range. When my insurance refused to cover the drug anymore a few months ago, my endocrinologist prescribed an IV infusion of Reclast. I hadn’t researched it much, and I didn’t like the idea of taking a drug that would stay in my bones for a year, hopefully improving my bone density, or at least stabilize it. It concerned me that you couldn’t stop the treatment if you experienced side effects. I am very grateful that I haven’t noticed any side effects, and we’ll see what my bone density is like in February. ***Note: I’m about to turn 66. I was diagnosed with osteopenia in my 40’s. I took calcium and vitamin D for years, (still do) & walked a lot for weight bearing exercise. When I was 54 I started taking bio identical estradiol (transdermal) & micronized progesterone (orally), hoping it would help prevent more bone loss. I took them for about 7 years. I think I was first diagnosed with osteoporosis in 2018. The worst my bone density has ever been is -2.8.*** I started taking Forteo in 2020, a few months before I was going to be having spinal fusion surgery because of a collapsed disk. My orthopedic spine surgeon told me after my surgery that he was surprised & pleased by my bone quality in my spine, better than he expected based on my osteoporosis diagnosis. There were no complications or problems during or after my surgery, which was great news. I am sharing this because it seems to show that bone density measurements don’t always show the true quality of our bones. Reassuring to me.

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Replies to "My endocrinologists, the first one who retired after I had been going to him for a..."

Good morning @sudsie58 thank you very much for sharing your experiences. You are among the very few who had used FORTEO more than 2 years continuously. Did you have your Dexa scan annually (or biannually) during treatment with FORTEO?

If you don’t mind, could you share your bmd % increase during and at the finish of FORTEO? This information will help quite a few members here on the forum as some are contemplating the use of FORTEO beyond the regular 2 years. Thanks a lot!

@sudsie58 my bone marker testing showed that Tymlos had stopped working at 18 months. Some of us are wondering if we can do more anabolic treatment after "locking in" gains so far with a bisphosphonate. Some posters have said that taking a break from Forteo or Tymlos will result in the medication working again. I plan on asking my endocrinologist about this next time.

These meds do improve bone quality and it is always possible that that effect continues past 18 months.

If your bone density has never been worse than -2.8 you have been in better shape than some of us! Did you get insurance approval for Forteo because of your surgery needs?