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Anyone had ONJ while on a bisphosphonate?

Posted by sebutler @sebutler, Feb 28, 2025

Docs tell us that bisphosphonates only rarely cause ONJ. So I was wondering if anyone on this forum has gotten ONJ as a result of being on a bisphosphonate for osteoporosis (not for cancer). Might be helpful to have our own survey, since so many of us are scared of taking the drug. Also, if you did get ONJ, how was it treated, what was the experience like, and are you all healed now?

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hdeff | @hdeff | 6 hours ago
In reply to @shelmadine "ONJ was very severe with loss of many teeth, bone infection, antibiotic infusions for months, hyperbaric..." + (show)
Profile picture for shelmadine @shelmadine

ONJ was very severe with loss of many teeth, bone infection, antibiotic infusions for months, hyperbaric oxygen therapy for 2 months (5 days weekly). And several deep bone jaw bone debridement surgeries. It was miserable and expensive for years. I am grateful to be on the other side. I still have deep bone pain, but no infection. Bone infections are notoriously difficult to treat. Blessed, didn’t give up. This is my story only and others have no problems with bone saving infusions and pills. Hope this answers your questions.

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@shelmadine so sorry for all you went through. How long were you on bisphosphates before this happened?

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