Osteonecrotic Jaw (ONJ)

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DiVanDyke
Veteran Member


Date Joined Jul 2003
Total Posts : 734
   Posted 4/13/2009 9:12 PM (GMT -7)   
 
Hello to everyone,
I am back now after a long absence. I've known all of these wonderful people for 9 years now. Unbelieveable!
I've just become aware of a silent epidemic that everyone needs to be aware of.
I had another tooth crack due to chemotherepy. The dentist sent me to have it pulled and the surgeon was horrified that she had done that. Anyone on a drug in the class of Biophosphonstes is at risk of getting ONJ and should not have a tooth pulled. I am getting a root canal instead and a lot of patchwork by a new dentist.
The dangerous drugs are: Fosamax, Aconel, Boniva, Reclast, Zometa, Aredia, Didronel and Tiludronate. Sometimes these are necessary but the correct precautions and preventive dentistry is necessary. I told my St. Louis doctor that I was going off of the Zometa and she thougt it was OK. She shook her head yes, when I mentioned the ONJ risk getting larger everday. More and more people are showing up with it since these drugs have been around longer. If I had active cancer I might take it  but not now.
I just want everyone to  be aware and not be  sent to have a tooth pulled. Just google ONJ and you will have many sites to choose from . My best information came from my local dentist and surgeons. If they are seeing so many people with it in this small town, that is not good. I hope no one here has been affected. Di

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10391
   Posted 4/13/2009 10:41 PM (GMT -7)   
I went of Fosamax for the same reason. I was lucky to be seeing my dentist every three months, so I had only a small area which ended up responding well to debridement and a bone graft. Some women have lost enough bone to have significant cosmetic defects in their jaws.

I find it interesting how drugs targeted toward women (oral contraceptives, biophosphonates, weight reduction drugs) always seem to be only partially clinically tested before they are released, and we end up being unknowing guinea pigs.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 4/14/2009 6:27 AM (GMT -7)   
Wow this is something! Thanks for the heads up. I haven't taken any of the drugs mentioned and see my dentist faithfully. My problem now is old age and corners of teeth around a filling breaking off. Always something. Take care! Hugs MK


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 4/17/2009 8:40 AM (GMT -7)   

Hi Di!  It is very fortunate that your surgeon was able to run interference with that extraction! As you may remember, my dh is an oral surgeon and we have been dealing with bisphosphonate related jaw necrosis for several years now.  The risk applies to dental surgery that involves bone: extractions, implants, periodontal (gum) surgery or root canal surgery (not just a regular root canal). If you have been on any of the bisphosphonate meds, then you need to talk to the oral surgeon or dentist to discuss treatment options.  The risk of jaw necrosis increases with the time and dose you have been taking the drug.  There is a blood test call a CTX (C-telopeptide assay) that can determine your level of risk for jaw necrosis which will help determine how safe it is for oral surgery. If the risk is too high, a patient may need to take a drug holiday for several months and retake the test to see if there is less risk.  This is something that must be discussed with the dentist/oral surgeon and your physician!

I hope your tooth is comfortable now!

Frayda

 

 

 


DiVanDyke
Veteran Member


Date Joined Jul 2003
Total Posts : 734
   Posted 4/17/2009 12:49 PM (GMT -7)   
Judy, How forunate you were to have it caught so early. I have read that it can be treated at that point many times. I'm so glad you are well. I seems impossible to me that this is going on and no one knows it. I found out that my minister is at risk as well as a friend I work out with. They are on Actonel which is very powerful, like Zomita.
Frayda, how good to hear from you. Thank you for giving us all more information. I had forgotten about your dh but remember now. How are you!!!!!!!!!!!!!!!! Hugs, Di

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10391
   Posted 4/18/2009 1:20 PM (GMT -7)   
I feel very fortunate, and I won't take bisphosphonates ever again. I'll depend on calcium, vitamin D, exercise and not using steroids again to keep my bones healthy.

I find it incredible that there isn't a black box warning on this stuff. Osteoporosis is bad, but losing half your face could be a lot worse for many women.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


DiVanDyke
Veteran Member


Date Joined Jul 2003
Total Posts : 734
   Posted 4/23/2009 6:20 PM (GMT -7)   
Hi Judilyn,
Sounds like a good choice to me! I'm more deternined than ever to get out to exercise. Also, I asked my primary care doctor for an alternative to Osteoporosis drugs. She said she's have to do some research and not only did she but she mailed it to my house. She has me on Kudzu from the health food store. It is apparently the only thing with some real research behind it.
Di
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