I have developed a toothache that my dentist can’t explain. He thinks it’s Zometa. Anybody else had a similar experience?I have been doing Zometa for 6 years.
Zometa and toothache : I have developed... - SHARE Metastatic ...
Zometa and toothache
Yes me but I’m on Xgeva. I immediately panicked naturally and rang the oncologist about it to see if I could stop the next injection which was due. She agreed as long as I saw a GP and a dentist. I did both in that order. Turns out it was an infected tooth and I had a root canal done. The pain was tremendous and even opioids didn’t help much. After a couple of weeks of an antibiotic and the root canal it calmed down.
I probably should have seen the dentist first because he could have reassured me immediately whereas the doctor didn’t know what was causing the pain.
I took Zometa for 8 years. I started with TMJ symptoms. Medical College of VA diagnosed as arthritis and cautioned about dental work in the future. I am glad that you are going to MSK dental.
Zometa has a "rare" side effect called osteonecrosis of the jaw ONJ, which is death of the bone, generally of the lower jaw. We're usually told to get regular dental care when we're on it (and other bisphosphonates or Xgeva) and to stop taking it for 3-6 months before having a tooth pulled or other invasive dental procedures. When I was diagnosed with MBC in 2004, with bone mets, my dentist was not familiar with ONJ, but he learned about it soon after that. I was on Zometa until Xgeva became available and was on it until about 2-3 years ago, when I developed OJN. It was caught early and the oral surgeon I was referred to got it under control quickly. It has not caused me any pain. I see the dentist every six months and call if any issues come up between appts. I can't take the bone drugs any more.
thank you. What were the initial symptoms? I read up on ONJ but could not find that. Fortunately I have access to MSK Dental because my dentist does not have a clue. For me, several teeth started bothering me at the same time.
Greetings! PJB gave an excellent summary of ONJ, which sounds quite likely in your case. My wife had ONJ as well and it was probably the most painful part of her seven-year MBC journey to date. It took about a year to get under control, with the help of specialized dental oncologists at Dana Farber. In her case, the early symptoms were jaw pain and eventually pieces of bone protruding from her gums. These were ground down to keep them smooth so they didn’t tear up her tongue and other parts of her mouth. They eventually broke off, which then left small holes in her gum/jaw that were also potential sources of infection until they eventually healed. She tried lots of different remedies like magic mouthwashes to help with pain and further infection but it was a pretty nasty experience, which I’ve read in some places can affect over 10% of Zometa users. There are definitely others on this board who have had it and could share their experiences. (Put ONJ in the search bar and you should find some threads…) In my wife’s case, the absolute peak of her pain came one August evening when we took our daughter and her husband to Fenway Park for Billy Joel’s annual concert. It was not a very enjoyable evening for her, but she wasn’t gonna miss it! Good luck to you and hope whatever you have gets under control quickly!
Dave