osteonecrosis of the jaw

mawhinney

I am looking for information on osteonecrosis of the jaw and its link to bisphosonates (sp). Thanks to genetics, being thin, and cancer I now have osteopenia of the spine and osteoporosis of the hip with severe fracture risk. I eat all the "right" foods and exercise yet my bones continue to decline. I took Boniva for several years with no improvement. My oncologist recommends I start an injectible med but I do not want to  take something that could cause major dental/jaw problems. My dentist said that there is more and more info coming out about bone building meds causing dental/jaw problems.  I'm in a quandry as to what to do!

Anonymous

I know exactly how you feel.  I have a very dry mouth which plays havoc on my teeth.  However, I am getting Xgeva now. 

If you do decide to get the injectable drug, make sure you go to your dentist first and have all the work done that you need.

Are you taking calcium, magnesium and Vitamin D?  I would think they've been checking your calcium since you've been on Boniva.

Good luck on your decision.

weety

My onc told me the same thing--most people who get it are already compromised because of metastatic cancer and all the treatments that go with it.  Most healthy individuals do not have the same risk.

sandilee

I felt very much like you did a couple of years ago.  I tried Boniva and it made me sick.  My onc suggested an intravenous drug (they didn't have xgeva or other injectables back then) but I balked and said no thanks. I had read too much on the net about how bad they were.

 Two years later, I presented with a crushed T3,  cancer to the bone.  Would the cancer have stayed away longer if I'd been on the drug? Possibly. It's pretty certain that it would have helped.   I think if I knew then what I know now, I would have done it.

 I get the injectable drug Xgeva every 28 days. You would probably only get it twice a year. I  It's very easy to tolerate- no side effects that I can discern.  There is some strong evidence that it is protective against bone mets.  

 Most of the new research about bisphoshonates recommends that women go off of them after 5 years. Maybe you can just take some for a while and see how it goes. It's probably not something you need to take forever- just until your dexa scores improve.  

newbe6

My latest worry-ONC of jaw (osteonecrosis). I would appreciate any feedback.  I was in the middle of BMX and infection when diagnosed with osteopenia, and asked my PCP for reclast-without doing my usual due dilligence, due to the timing.  I take good care of my teeth.  But upon having a lose crown on a molar, the dentist discovered a broken tooth.  To make a long story short, it can't be fixed. I am not eligible for a bridge because there isn't anything upon which to attach the bridge.  Upon investigating an implant ($5000., but I will pay it), my oral surgeon (a personal friend) was very cautionary due to a higher ONC risk with extraction (necessary for an implant) and a SINGLE dose of injectible biophosonate-reclast.  I got a 2nd opinion, and there is considerable concern on the 2 oral surgeon's part-so much so that my dentist-who I trust and have seen for 25 years- feels I shouldn't do have the tooth extracted until it rots.  But without an implant, it is a matter of time before it will have to be extracted anyway and I can't chew on that side of my mouth, which limits my diet of fresh fruit and veggies. (It hurts to chew).  So I am going through with the extraction in May, will have bone grafting, and if it heals properly than an implant.

Everything that was said on this thread is correct.  There is a 30 page position paper on ONC on the American Dental Assoc website, but the problem is that the condition is underreported on injectible biophosphonate and not enough is known. The position paper in incomplete and biased, according to my oral surgeons inside information.   Most frequently ONC occurs with extraction and injectible biophosphonate for bone pain with cancer.  But it could occur in just one dose.  They highly recommend oral biophosphonate over injectible.  

 Please let me know your thoughts. 

weety

How long does your dentist think you would be at high risk for this after your treatment?  Does the risk go away after a year or two?

peggy_j

weety wrote:
How long does your dentist think you would be at high risk for this after your treatment? Does the risk go away after a year or two?

This is a good question. In my research I've never seen any estimate of how long patients need to have been off a bisphosphonate for the risk to go down. Has anyone else?

reesie

My oral surgeon says the bisphosphonate stays in the system up to two years.

dogsandjogs

I've been on Fosamax for about 4 years. A few months ago I began having a really bad pain in my lower gum area. I was worried about the fossa-jaw problem so went to my dentist. He said there was no infection and he thought the pain was caused by two old tooth roots which were now (years later)working their way out.   He did not want to dig them out because one was wrapped around a jaw bone and since I was on Fosamax, etc. etc.

I decided to go without Fosamax the following week and lo and behold the pain disappeared completely. I really think I had the beginning of a the foss-jaw so haven't tried to go back on the medicine. The interest said if my jaw was fractured it would have shown on the x-ray and I would be in much worse pain.  Hm---the pain was bad enough to keep me awake 2 nights---

Not sure how the jaw problem presents itself when it is just beginning, but I am taking no chances so am discontinuing the Fosamax.

Kaara

This is the primary reason that I am taking Tamoxifen instead of an Al even though I am postmenopausal.  I don't want to risk getting osteoprosis and having to take a medication that could attack my jaw.  I have had long term peridontal disease which is under control, but certainly don't want to risk stirring it up again and perhaps having loss of bone in my jaw area.  Yikes!

SoCalLisa

Use Listerine and Arm and Hammer toothpaste with peroxide and baking soda every day

newbe6

Sorry it has taken me so long to reply.  I haven't been on this site for awhile and thought this thread was dead.  Both of my oral surgeons say reclast does not ever go away; it is stored in the bone. The more injections, the higher the risk. Although I had only one injection, I regret not researching reclast beforehand-oral bisphonshonates are much safer.  My oral surgeons are personal friends of the oral surgeon who "blew the whisle" on the drug company that underreported the incidence of reclast (and other injectable bisphonshonates) and ONJ, which the drug company is still underreporting-therefore most docs go by the reports of the drug manufactor. The dental association have members objecting.

Anyway, I am scheduled for extraction 5/8 and am scared, but optimistic.  I just got nipples Friday, so one thing at a time.

 Feedback is very welcome.

 Pam 

luv_gardening

I was offered Fosamax about two years ago when I found out I had osteoporosis, but I refused. The research I've read suggest the ONJ may be related to infection in the jaw. I defy anyone to say they will never get any teeth removed for the rest of their lives.

I have always had my teeth checked regularly and look after them well.  I needed a filling a year ago and recently the tooth suddenly went bad, though there was no additional decay.  The infection went up into the bone as I could feel it there.  I had root canal therapy which means the tooth may eventually weaken and need to come out.  Then I needed to have a tooth capped as it's had a lot of fillings and is breaking. I don't know how long it will last.

That's why I think they are completely unrealistic when they say, see a dentist before starting Bisphosphonates.  I think the cancer treatments and low vit D levels probably contributed to my dental problems.  

I take vitamin K2 and Strontium as well as calcium and Vitamin D, and use a vibration machine, and hope for the best. 

Linda1966

Newbe 6, is there any chance you can get a root canal instead of the extraction? I broke 2 teeth after my first infusion of zometa. One very very badly and was in complete agony. I got a referral to an oral surgeon who has dealt with biphosphanates before and he said it would be best to put off extraction for as long as possible. I asked what other option I had and he said a root canal COULD do the trick for a while so that with luck by the time an extraction was needed, more of the zometa would be out of my system (he said it has a half life of 7 years and as I had had the infusion so recently the longer the better). I had the root canal back in March - had a huge infection that swelled my face up badly which was treated with antiobiotics. They gave me antibiotics the second time to take in advance of the next bout of work to do with the root canal which helped stop infection before it started. Now nearly 2 months on, my tooth is fine and I feel like I dodged a bullet.

newbe6

Lyndal1966, Thanks for your help.  I already had a root canal on that tooth and they cannot do a bridge (because the teeth next to it already also have a root canal).  I suppose I could postpone it, which was the dentist and original oral surgeon's recommendation.  But it hurts my jaw to chew, although not nearly as much, I suspect, as ONJ would.  The second oral surgeon, who consulted at length with the experts, said that since the questionable tooth is an upper tooth, it is not as risky as lower jaw.  Which tooth was it that you had the root canal?  How soon after the zometa was the dental problem.  

My reclast injection was 6/4/11 and the oral surgeon (the second one) is recommending the extraction 5/8/12, saying that balancing risks and benefits, he thinks this is the best course.  He mentioned that if I don't do anything I could get arthritis of the jaw, which is what it feels like now-plus there is a hole where the molar should be.   The little bit of tooth that is left may not work for very long, so waiting is living with what will be inevitable.  I wiould take antibiotics before the extraction.  At this point, I plan on doing the extraction.

I am glad to hear that you are okay.  I am sure hoping we both dodge the bullet-a good way to put it! 

luv_gardening

Antibiotics are fine for infection in soft tissues, but ONJ appears to be from infection in the jaw bone, and bone infections are notoriously difficult to resolve as antibiotics don't get into the bone in sufficient quantities to help.  This is my layman's understanding so please research yourselves. 

I read a lot when I had to make the decision whether to take a bisphosphonate, and I will continue to read any studies as I may need to make the decision again if I ever have progression.