Home To Message Boards Site Map 

RA in jaw

Hi,

It's been quite a long time since I've been on this site. I used to post here back in 2002, when I was first diagnosed with RA, but I forgot my old username and had to create a new one!

Anyway, when I was diagnosed in 2002, it was after 3 years of pain in my feet. I of course didn't know what was going on and had it dismissed by several doctors. I also had a trigger finger episode in my right hand and had that surgically corrected.

Once I was finally diagnosed I got started on methotrexate, then arava, and then I was prescribed minocycline by my GP for acne--not by my rheumatologist for RA. Anyway, my rheumatologist decided I was doing so well 18 months ago that she wanted to see how I would do off of any meds. I did great while not on the mtx and arava, but I was still taking the minocyclinde for acne. Then when I had some bloodwork done in June, my liver enzymes were over 400 (normal is like 30-50). Anyway, it turned out the minocycline was causing me to have autoimmune liver heptatitis. So I had to stop taking it.

Almost immediately after stopping the minocycline, my jaw started hurting. For six months I was in pain and went first to my GP, who told me it was probably TMJ disorder, then to my dentist, and then to an orofacial pain specialist. By the time the specialist ordered a CT scan of my head, I could barely open my mouth at all and the pain was unbelievable. Just talking hurt. Surprise, surprise, the CT revealed RA damage to my TMJ jaw joint.

So I went back to my rheumatologist, who said that yes indeed this was the RA, back with a vengeance. When she found out that I had been taking minocycline for acne, and that as soon as I stopped it the flare hit, she said that basically I can never be off of meds for the rest of my life, because it seems like the minocycline was controlling it and as soon as I stopped taking it the RA hit. She said that she can count on her hands the number of patients she's seen with this type of involvement in their jaws. And they were all ones who had severe damage elsewhere. Luckily for me, the only other place I've had it (that I know of for sure because of my X-rays showing erosions) is in my feet. She said I was one in a million because she's never seen this type of acute damage that hit so quickly in the jaw. Lucky me!

I've now had a steroid shot into my TMJ (NOT FUN) and am started on Humira. I will give myself my second shot next week. I am also on daily prednisone but trying to wean off it. I can now eat soft solids though I've been told not to by the specialist, who recommended only liquids. I also have a jaw splint that I wear at night.

My question for you all is:

How many of you have had jaw involvement? What happens to your jaw over your lifetime? I'm 27 and I'm worried that even once the swelling is down, the damage that has already occured will get worse as I eat and talk over my lifetime. Will I ever have normal function in my jaw, or will it get worse? And since the other people my rheumatologist has seen with this kind of damage have been in her "severe" group, does that mean I will be "severe" down the road too? I haven't been able to get a straight answer out of my rheumatologist or the orofacial specialist I saw.

Mine started in my jaw, 20 years ago, I can't really remember all the details, but I had to cut everything really small and chew softly on the opposite side. When the dentist couldn't find anything wrong, my gp did bloodwork and dx RA. It has since moved on to other joints, hands and knees are the worst. My jaw just gets stuck sometimes and I have to unclick it, but it isn't painful. I started on sulfasalazine, went to MTX for 16 years, now on Remicade & MTX (and Pred to stop a bad flare, which I'm now off). Your jaw sounds much worse than mine and of all the joints RA can hit your jaw is one of the worst to have involved because of eating and talking, I hope the steroid and Humira work for you.
Deidre

I also have ra in my jaw.  It comes and goes just like the with the other joints. 

I hope the humira works for you, Katie.  Good luck!

katiesmom,

Had you been taking phosomax or any other bone building drug?

LEV

I also have RA in my jaw.  It comes and goes like Kelstev's. 

I don't think the dr's will give you a straight answer about how severe it can become because they just don't know.  Everybody is different and there is no way to predict our future.

Good luck and welcome(back)!

[QUOTE=mamamiax4]

I also have RA in my jaw.  It comes and goes like Kelstev's. 

I don't think the dr's will give you a straight answer about how severe it can become because they just don't know.  Everybody is different and there is no way to predict our future.

Good luck and welcome(back)!

[/QUOTE]

That is the absolute truth - they don't know. They make educated guesses and hope for the best.

I knew someone in the 70's who had jra damage that was so bad they did a joint replacement.

If it could be done back then it can be done now, and better. There are some ruined joints you don't have to put up with.

I was dx about a year ago with seronegative ra. I suspect I have had it for at least 3 years though. My hands, wrists, feet, ankles are the worse but my knees, hips, back and neck and not far behind.  I have has some very minor tmj pain in the past but nothing I would really complain about, just a bit of clicking and some soreness if I clenched my jaw too much.

Last October, I woke up one Saturday and could not open my mouth more than about one fingers width and it hurt like HELL.  I went to my dentist the following week, who sent me to an oral surgeon who sent to my the oral facial pain specialist.  They did some sort of computer x-rays and showed that I had such extreme damage from the ra that almost half of my jaw was deformed.  It was completely dislocated.  They made me the full mouth splint and I had 5 or 6 cortisone shots and it took almost three months before I could really eat anything substantial.  Its been now 5 months and it still pains me, I wear my splint more and more, not just at night and I can only open about half as far as I used to be able.  I can't chew things very well or eat anything real crunchy.

Apparently this sort of thing takes a long time to heal because the tendons and ligaments are so stretched out.  They told me I will probably never have full function and it may dislocate periodically so I have to be very careful.

I do not know what the future holds for either of us.  I am also on humira and steroids among a list of other things.  X-rays show damage in most all of my joints yet I remain seronegative. 

I hope you feel better real soon!
So sorry to hear about the TMJ trouble. I have had RA in my jaw also and it was no picnic. I remember how painful it was just to eat a piece of lettuce. It eventually went away (it occurred for about a month during my palindromic period)and I have not had a problem since.

I guess I would consider how RA affects other joints to guestimate what will occur with the jaw. I know my wrists hurt me the most and I have joint damage loss of range of motion. But when I am not in a flare the pain is gone and I get some ROM back. So I would think that even if you have jaw damage you may not always have pain. The only real question is if you lose any range of motion- which could be a bigger problemDear Katiesmom: Immobolizing of joints: I have no experience with that one.  When I had a severe pain in one of my arms I tried not to move it one whole day, I reallly couldn't move it thereafter without pain, so I thought immobolizing isn't for me. I'm sorry your jaw is in such a state and that you are in such pain. I'm fairly new to this forum so I hadn't read your posts before.  This is a terrific group of people and they have so much compassion for each other. Good luck with everything, (hurt, but doing better)

Welcome back!

Thanks for bringing up TMJ joint problems...I hope yours cease to be painful fast...

Katie's Mom - when you were on mino were you ever told to take a supplement to protect your liver? The most common ones are milk thistle and NAC.  Even though you had to stop the mino (and I hope the Humira works for you) another option would be doxycycline, along with liver protective supplements.  Hope you get relief soon.  Pat

Thank you to everyone who has responded. I didn't know about taking medications to protect my liver while on minocycline, so I might suggest that to my doctor if I don't get the results I want from Humira. I was doing so well on mino (even though it was prescribed for something else).

Anyway thank you everyone. I greatly appreciate your comments.

 

Copyright ArthritisInsight.com