One of the things I am contacted most about is information on jaw involvement with Juvenile Arthritis. Let's face it, there is not a lot of information out there. After one of my readers contacted me seeking more information, I looked to a couple of my fellow JIA moms for wisdom. The following is from a mom who has a daughter with extreme jaw involvement. Dr. Cron and Dr. Waite, mentioned in her writings, are located in Birmingham, AL. They are believed to be some of the experts of this field. I asked permission to share my friend's information in hoping it might help another family looking for any information concerning inflammation in the jaw with JIA. My prayer is that it helps someone. -Jenny Nelson
"My 17-year-old daughter was diagnosed at 14 with TMJ involvement, and Dr. Cron is her pediatric rheumatologist. She has had three aristospan (steroid) injections in her left side, and one aristospan injection in her right side. The injections helped, but the pain, inflammation and deterioration always return at some point.
Dr. Cron sent us to Dr. Waite for Remicade injections after my daughter's last MRI. Because my daughter has had several friends who had negative results from Remicade injections, she told Dr. Waite that she was not comfortable with that option at this time. Dr. Waite understood, and in fact, said he wouldn't suggest Remicade injections just yet because she is able to eat and the pain in her jaw is manageable. He recommended not doing anything at all until she has significant pain and/or is unable to open and close her jaw. When she gets to that point, he said he would do a procedure to "clean out" the joint, which he has found to be helpful in a lot of patients. He told her that she has several options besides Remicade, and that he is willing to work through those options with her.
I see that you mentioned that the latest results of this procedure do not match the positive/potential beneficial outcomes that were portrayed in 2013. It is my understanding that injecting Remicade into the TMJ began as an experimental treatment, and as such, the long-term effects of this treatment were unknown. Of course, every patient is different, and every patient reacts differently to medications, so some people have had positive results, while some have had negative results. If you have any doubts at all about the Remicade injections, I would suggest that you discuss them with Dr. Waite. He is very open-minded and willing to listen to your concerns and answer your questions."