Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Hi Helen, unfortunateky the jaw is a big issue with JRA. Many of the people I know have TMJ or other jaw related issues. I myself had to have surgery on my jaws when I was 12 so I am sure things have changed as thats been 30 (OMG) years ago. Do follow through though, ok...hugs to y'all! Donna************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Helen, Call the Dentist and have him check the Jaw. 's Jaw joints act up and she can not bite down on anything also it can act like a ear ache too. Get it checked. RobbinSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Helen, Aundrea has jaw pain but only on the left side. The rheumy and dentist said it's TMJ. Of course they don't know if it's due to arthritis or not. She said its worse if she is eating something that is very chewy. I have read that chewing gum is really discouraged for people with TMJ. She recently got braces. Sometimes it makes it worse and other times it can cause improvement. Of course we are hoping that it improves. They can do surgery to correct it but thats typically only done in the most severe cases. You can tell if its TMJ if you put your finger on the jaw hinge and have Nick open and close his mouth. If you feel a rubbing or popping sound then TMJ is quite likely. Mention this to both his rheumy and dentist on your next visit. Sorry to hear that the remicade visit went so poorly. Sounds like Nick is wiped out. Did his fevers go away? (aundrea 12 systemic jra/gerd)- -- In , Helen Burger <hburger64@...> wrote: > > Hey everyone, > > Does anyone have any experience with Jaw involvement. has been complaining of his jaw hurting and when I ask where, he points to both jaw joints. He has never complained of his jaw hurting before. His labs from today show is CRP and SED going up, nothing major, but higher than they have been since he's been on remicade, so something is brewing. > > Remicade was a little messy today, somehow Nick managed to knock the needle out of his port, he knew something was wrong when he felt water running down his chest. I was able to clamp the tubing so we didn't lose anymore remicade while I called the nurse. The bad news was he had to be re-accessed which meant another needle poke. Nick just laid there and cried " I hate this so much " It broke my heart. We have been home 3 hours now and Nicks been sleeping 4 1/2 hours. He never sleeps like this after remicade. > hugs Helen and (10,systemic) > > > _________________________________________________________________ > More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. > http://imagine-windowslive.com/hotmail/?locale=en- us & ocid=TXT_TAGHM_migration_HM_mini_5G_0907 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Hi Helen! Elaney has TMJ and arthritis in her right jaw. Sometimes when it hurts she thinks it is her ear. It can really get to popping at times! She thinks it is fun to gross me out with the popping noises! I sure hope poor Nick gets to feeling better. Those needle sticks are not fun. (Except Elaney actually claims to like them, but she is WEIRD!) Take care.--- & Elaney(13 w/ oligo ext JA, heart defects, scoliosis)Helen Burger <hburger64@...> wrote: Hey everyone, Does anyone have any experience with Jaw involvement. has been complaining of his jaw hurting and when I ask where, he points to both jaw joints. He has never complained of his jaw hurting before. His labs from today show is CRP and SED going up, nothing major, but higher than they have been since he's been on remicade, so something is brewing. Remicade was a little messy today, somehow Nick managed to knock the needle out of his port, he knew something was wrong when he felt water running down his chest. I was able to clamp the tubing so we didn't lose anymore remicade while I called the nurse. The bad news was he had to be re-accessed which meant another needle poke. Nick just laid there and cried " I hate this so much" It broke my heart. We have been home 3 hours now and Nicks been sleeping 4 1/2 hours. He never sleeps like this after remicade. hugs Helen and (10,systemic) More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. Get more! Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2007 Report Share Posted September 8, 2007 Offering up another prayer for another little friend of ours around the world. And one for his mum too. Jo Bayly, 5, extended oligo > > Hey everyone, > > Does anyone have any experience with Jaw involvement. has been complaining of his jaw hurting and when I ask where, he points to both jaw joints. He has never complained of his jaw hurting before. His labs from today show is CRP and SED going up, nothing major, but higher than they have been since he's been on remicade, so something is brewing. > > Remicade was a little messy today, somehow Nick managed to knock the needle out of his port, he knew something was wrong when he felt water running down his chest. I was able to clamp the tubing so we didn't lose anymore remicade while I called the nurse. The bad news was he had to be re-accessed which meant another needle poke. Nick just laid there and cried " I hate this so much " It broke my heart. We have been home 3 hours now and Nicks been sleeping 4 1/2 hours. He never sleeps like this after remicade. > hugs Helen and (10,systemic) > > > _________________________________________________________________ > More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. > http://imagine-windowslive.com/hotmail/?locale=en- us & ocid=TXT_TAGHM_migration_HM_mini_5G_0907 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2007 Report Share Posted September 8, 2007 -hey , Nicks jaw does not pop or rub when he opens/closes it. He had dental work 2 weeks ago and at 1st I thought his sore jaw was from holding his month open, then he quit telling me about it so i thought all was fine. But I received an email from his teacher saying that hes complainied about his jaw a couple of times when asked to fill out his daily pain chart. When I now question him about it, he tells me its stiff in the morning and aches thoughtout the day. To add to the confusion, the top of Nicks tongue is sore ( i think from sucking on a push pop until the edges were like razor blades) Ive also noticed hes talking though closed teeth sometimes. He slept 5 hours yesterday PM, at the end of remicade, the car ride home and then on the sofa until i woke him to go to appplebees for his brothers birthday ( Zach turned 13 yesterday). He spent the time waiting for his food napping in the booth and then took 45 mins to eat some french fries and 3 chicken tenders. He went to bed at 9pm and is still sleeping now. Hugs Helen and (10,systemic) p.s Nick hates gum, tried it once and never again, strange kid!! -- In , " sonia1md " <sonia1md@...> wrote: > > Helen, > > Aundrea has jaw pain but only on the left side. The rheumy and > dentist said it's TMJ. Of course they don't know if it's due to > arthritis or not. She said its worse if she is eating something that > is very chewy. I have read that chewing gum is really discouraged for > people with TMJ. She recently got braces. Sometimes it makes it > worse and other times it can cause improvement. Of course we are > hoping that it improves. > > They can do surgery to correct it but thats typically only done in > the most severe cases. You can tell if its TMJ if you put your > finger on the jaw hinge and have Nick open and close his mouth. If > you feel a rubbing or popping sound then TMJ is quite likely. > > Mention this to both his rheumy and dentist on your next visit. > > Sorry to hear that the remicade visit went so poorly. Sounds like > Nick is wiped out. Did his fevers go away? > > (aundrea 12 systemic jra/gerd)- > > -- In , Helen Burger <hburger64@> wrote: > > > > Hey everyone, > > > > Does anyone have any experience with Jaw involvement. has > been complaining of his jaw hurting and when I ask where, he points > to both jaw joints. He has never complained of his jaw hurting > before. His labs from today show is CRP and SED going up, nothing > major, but higher than they have been since he's been on remicade, so > something is brewing. > > > > Remicade was a little messy today, somehow Nick managed to knock > the needle out of his port, he knew something was wrong when he felt > water running down his chest. I was able to clamp the tubing so we > didn't lose anymore remicade while I called the nurse. The bad news > was he had to be re-accessed which meant another needle poke. Nick > just laid there and cried " I hate this so much " It broke my heart. > We have been home 3 hours now and Nicks been sleeping 4 1/2 hours. He > never sleeps like this after remicade. > > hugs Helen and (10,systemic) > > > > > > _________________________________________________________________ > > More photos; more messages; more whatever – Get MORE with Windows > Live™ Hotmail®. NOW with 5GB storage. > > http://imagine-windowslive.com/hotmail/?locale=en- > us & ocid=TXT_TAGHM_migration_HM_mini_5G_0907 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2007 Report Share Posted September 9, 2007 Helen, I would have Nick's jaw looked at even by his dentist. I had a similar situation to Nick. I had jaw pain after a dental procedure that just kind of ached. One day I went to sleep and woke up with my jaw locked shut. Aside from the ache, there really wasn't any warning for me, like clicking. I just suddenly couldn't open up it practically at all. I couldn't even fit a macaroni and cheese noodle into my mouth. The dentist nor specialist could open it manually either. I had to do a lot of physical therapy to be able to get it to open again. I would get Nick's checked out if I were you. Arthritis can cause this, as well as a mechanical problem. Good luck. KimSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2007 Report Share Posted September 13, 2007 Ok - I'm a bit late in answering, but has JRA in both TMJs. On our first visit back after 7 years in remission, the new rheumy did a thorough examination. had complained for months about her jaw hurting, but because she also has horrible teeth, I did not associate JRA with the joint pain - stupid me.... They did a MRI of both joints and sure enough - there is evidence of JRA in both with bone damage on one side and active inflammation on the other. At the exam visit, the doctor demonstrated the " finger test " with . At the time, she could barely fit 2 fingers into her open mouth (most people can fit all 4 fingers vertically). She had both joints injected over the summer (has to be done via a guided CT under sedation) and while still experiences pain - can fit 3 fingers now... big improvement! So, to answer your question - Make sure you mention this to your rheumy - my rheumatologist explained that probably had active inflammation in that joint from her onset of the disease considering the damage already seen and she had been going to a rheumatologist since the age of 4 (she's now 11). It is an easily missed joint by both parents and doctors. If Nick continues to complain of pain and you notice that he cannot open his mouth as wide as before - I would highly recommend joint injections - it has really been a major improvement for . She is also on Methotrexate. I hope gets feeling better soon. Lori Shubel (, age 11, Poly JRA) > > Hey everyone, > > Does anyone have any experience with Jaw involvement. has been complaining of his jaw hurting and when I ask where, he points to both jaw joints. He has never complained of his jaw hurting before. His labs from today show is CRP and SED going up, nothing major, but higher than they have been since he's been on remicade, so something is brewing. > > Remicade was a little messy today, somehow Nick managed to knock the needle out of his port, he knew something was wrong when he felt water running down his chest. I was able to clamp the tubing so we didn't lose anymore remicade while I called the nurse. The bad news was he had to be re-accessed which meant another needle poke. Nick just laid there and cried " I hate this so much " It broke my heart. We have been home 3 hours now and Nicks been sleeping 4 1/2 hours. He never sleeps like this after remicade. > hugs Helen and (10,systemic) > > > _________________________________________________________________ > More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. > http://imagine-windowslive.com/hotmail/?locale=en- us & ocid=TXT_TAGHM_migration_HM_mini_5G_0907 > Quote Link to comment Share on other sites More sharing options...
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