Personal Story of Recovery from Osteonecrosis of the Jaw

A Patient Advocate, posted this on a discussion group in May 2008 (gave us permission to post here)

As one who has had Necrosis of the jaw that healed itself, I can truthfully say that there are several factors involved in all of this. One is the gums and how healthy they are and the tendency towards keeping your mouth as clean as possible.

It seems there are some theories out there about necrosis starting because of the bacterial content of the mouth and several different interactions.

Part of this also has to do with the action of bisphosphonates in the bone remodeling process. The longer one is on the IV bisphosphonates, the more the risk of necrosis increases with any dental procedures but especially extractions.

I was on about the 22nd or 24th dose of Zometa when my necrosis developed after having had a tooth filled---nothing more.The necrosis took almost three months to heal. However, this was only after a periodontist, who specializes in implants, took one look at me and threw me on oral penicillin for almost 6 weeks to clean up the bacteria in my mouth and three times daily using a special mouth rinse.

I am now on quarterly dental hygienist cleanings and exams.

From the information I have about bisphosphonates, Zometa which is used now more often than Aredia, is the culprit most of the time. However there have been reports of even the oral bisphosphonates, like Fosamax, causing necrosis of the jaw.

Novartis knows of these problems and they sent several of their representatives who did some of the research on Zometa to a special meeting held in York, PA about the necrosis problem.

Invited guests were the entire dental society in York County, our oncologists, oncology nurses, our local cancer center administration, and me---the one patient with the experience. It turns out there were 6 patients in this area who had the jaw necrosis and all were on Zometa.

My periodontist would not recommend any implants for me. In fact his recommendation is to keep things very clean in the mouth--hence the increased schedule of cleanings for me---and do as few major procedures as possible as long as I am on the Zometa.

The other thing to consider with all of this is that Zometa hangs around for quite awhile after it is stopped so it is not one of those drugs that once it is withdrawn it is gone.

Also Novartis does not know how long it sticks around after treatments are stopped--some estimates are 3 to 5 years.

This has been my experience. Any questions, contact me please. I am very willing to share info.

Lois Anderson

Currently I am a graduate social worker with my MSW. My BS is in Medical Technology and I am a nationally certified medical technologist BS, MT(ASCP) who previously worked in the clinical laboratory.

LOISA2@AOL.COM

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