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I have osteonecrosis of the jaw.

Posted by mlg23 @mlg23, Oct 12, 2025

I started with Forteo years ago(in my 50’s), then I had Reclast infusions
For many more years, and finally the last few years I had Prolia injections. I am 75 years old, and have now been diagnosed with Osteonecrosis of the jaw. Does anyone else have this diagnosis, and if so, what treatments have you had? I am being checked every 6 months by University of Florida health Dentists, with (a watch and see approach). My Rheumatologist wants me to start Tolos.

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prarysky | @prarysky | Oct 19, 2025
In reply to @mnsnowgirl "I have trouble swallowing even smaller pills than calcium. I found that swallowing them with a..." + (show)
Profile picture for mnsnowgirl @mnsnowgirl

I have trouble swallowing even smaller pills than calcium. I found that swallowing them with a carbonated beverage does the trick. Works every time for me.

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@mnsnowgirl Glad people are sharing their swallowing coping strategies. I wish your suggestion worked for me, but my own swallowing issue is neurological and I have to avoid anything carbonated which can trigger a largyngospasm for me. This is a rare condition so most people don't have to worry about that. My work-around is to dilute anything carbonated or acidic (like vinegars, wine).

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drsuefowler | @drsuefowler | Oct 20, 2025
In reply to @dtevis "@pyates She said just having osteoporosis can contribute to ONJ. Our bone metabolism is different with..." + (show)
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@pyates
She said just having osteoporosis can contribute to ONJ. Our bone metabolism is different with osteoporosis and perhaps the thinning bones contributed to ONJ. I have been told my teeth roots are not anchored quite as good due to my osteoporosis though I do not have ONJ.

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@dtevis and @pyates, My theory is that when there are more osteoclasts than osteoblasts, as in osteoporosis, there can be bone damage anywhere, including the jaw. I think this affects tooth roots too. I have two new tooth root resorpsions. I have taken Forteo and and now am on a half dose of Tymlos, both increase osteoclasts and osteoblasts. I don't know if osteoporosis is eating my tooth roots or the medication is doing it.

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soggybones | @soggybones | Dec 24, 2025
In reply to @mlg23 "Thank you all. I had felt alone with this issue. You all are very kind to..." + (show)
Profile picture for mlg23 @mlg23

Thank you all. I had felt alone with this issue. You all are very kind to share your experiences. I also do the rinses and try to keep the area very clean.
Does anyone know of a specialty clinic or hospital that may focus on this issue?
MLG

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@mlg23 I don't know where you live, but if there is a large teaching hospital in your area you may want to seek help there. Here in Boston we have a dental school as well as some very good teaching hospitals that can take on ONJ cases. Best of luck to you! I hope it clears up.

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