Erosions in right TMJ. Yay. | Arthritis Information

I don't understand why my right side is worse. Anyway, oral surgeon was 100% unhelpful except for taking x-ray. Basically said we could do CT but it's pointless, I can't help you, you have erosions in right jaw typical of RA, need to continue with RA treatment. Last x-ray was from 1998. It was normal. I don't think I've had one since. No way to know if erosions would have shown up 2 years ago, 1 year ago, or this summer (had horrible month long flare in September--could it have been from that alone?) The guy didn't even offer to have me take my x-ray to RD, but I asked nurse and she printed me a copy. RD can probably give me a better feel for the erosions since he looks at them more.

Maybe that will help my RD decide whether to stick with MTX a while longer or switch to biologics. At this point I want to go to Vandy just to see some other options (other DMARDS, although I swear plaquenil was making me feel so ill I stopped taking it. I am going to try it again once I'm feeling better but I'm still lightheaded/nauseated and don't know if it's virus, ulcer, thyroid, whatever, I'm tired of having to be the one to figure it out).

ANYWAY. Will probably schedule with RD here ASAP and get another referral to Vandy? I dunno. I have my thyroid scan on Wednesday. I probably need to see a gastro. Everyone around here has been so sick that I want to make sure it's not a stomach bug but I'm pretty sure it's gastritis or an ulcer, maybe gallbladder. RD was like "try cutting back on Mobic" but that was after I'd already done so for 2 days and it did nothing. Will schedule RD tomorrow and deal with gastro issue after Wednesday.

I'm tired. Blah. I need to get some more books on this and read up.

Isn't the TMJ always the last joint affected? And RA is almost always symmetrical? I keep thinking I have psoriatic arthritis with no skin stuff yet or something else because I have swelling and bone erosions but I'm RF negative, anti-CCP negative, and inflammation is not symmetrical. As my husband would say I never have the normal type of anything. My thyroid looks like Hashimoto's but my TSH is normal. Sigh.

Gearing up for the long haul. I have cried after much less disappointing appointments but I guess I'm so glad that no one will ever say "get on some antidepressants and start working out" again that I'm very "whatever" about this one. Not that I don't need to workout more, but at least I'm not being discounted anymore.

Thanks for listening, my husband is dealing with a difficult 4 year old at home, family is tied up with politics and busy for tomorrow, and I haven't shared enough with friends locally and they don't understand. Will start to confide in them soon b/c I need to be able to vent, even if they dont' understand, but I seem fine to them, etc.

I am sorry to hear of the erosions, Katie. I hope you get some more answers from your RD.

My right side of my jaw it affected more than my left side. Sometimes I do not even think my left side of my jaw is affected. I can tell when my right side is swelled, because I get muffled hearing and it hurts to chew.

I saw this pics of your jaw when you posted them, and I do not think mine has ever looked like that. But Dr's have been able to tell my the right side of my face was swelled more than my left. But it never looked like yours. I felt so bad for you. I hope it does not get that bad again for you.

Well... keep us posted.

Thanks Joonie! I wish there were rhyme or reason to this, but there wasn't any good reason that my jaw flared when it did, and I'm lucky its not so bad anymore.

It makes me feel better that you have asymmetrical jaw issues too. I just need to be like "RA" and not worry about it instead of doing what I am, which is, is it psoriatic? AS? Related to crohns? Even though I don't have skin issues, lower back issues, crohns symptoms, etc. Just RA. Plain old RA. Need to stop worrying about HLA types when I don't even understand what that is! :)

I was talking to my dad about all this and he said "well you know we should look at Vandy since it's something you will have to deal with for a long time." As someone who was convinced I had carpal tunnel less than a year ago, that was sobering to hear that from him, and realize it myself. I have learned from you, at a certain point, you just have to go to your appointments, take your meds, complain when you need to and move on. Lord knows what the future brings! It does make me want to be extra good about diet and exercise though, and maybe start eating less cookie dough...maybe :)

I hate that the dr. won't do anything for you. I just had an MRI of the jaw since my xrays showed so much erosion. Surgeon really wants to get into the joint to clean it out. I am not to sure....

My RD always says that RA may be asymmetrical but we favor one side more than another. My right side of the jaw is way worse and that is because I tend to favor it.

I'm not sure you're correct about the jaw being the last to be affected. Some never have jaw issues and some start out with jaw issues.

Hope you're feeling beter soon.

How FRUSTRATING!

Sorry you are having so much trouble. Hope you get to the bottom of this and get some relief soon!

I just wanted to say that I am so sorry. I wish that I knew whether every thing that is going on was either ra related or not. Keep us posted and take care.KatieG, I'm sorry for your troubles. I'm newly diagnosed with RA via blood tests. I've had hip problems for years, jaw pain for years. Grind my teeth at night, wear bite guards which is the only reason I still have teeth! My TMD (disorder in TMJ) first came on me three years ago, when several other health issues were occurring at the same time. It was excruciating, but has simmered down some and the pain is now constant but not as intense. My jaw hurts only on the left side. My RA is definitely not bilateral, bad hip on left, jaw on left, thumb on right, foot on right. My neck hurts on both sides. So there seems to be no rhyme or reason sometimes.

katie, I'm sorry your jaw is giving you such troubles. Is it affecting your teeth at all? I hope they figure this all out, and quickly, I might add. I don't know which is worse, dealing with the pain of it, or not knowing exactly what "it" is and how the treatments should go.

Hang in there sweetie!

deb

Thanks. I was trying to get an idea of how serious this may be (still confused--how bad are the erosions? Is that a valid question?) so I asked what the worst case scenario was if I couldn't get RA under control. He said my lower jaw would start to recede and my bite will mess up and I may get an open bite deformity. Thanks doc! His bedside manner was so bad that I wasn't upset, just shocked.

When I had the swelling though I couldn't get my lower teeth behind my upper teeth, on account of the swelling. My bite is a bit different now. Not awful or obviously different, but my molars on each side definitely don't come together in synch.

Please get another opinion. There are things that can be done. Before being told the dreaded surgery word, I have had cortisone injections, PT, and a TENS unit for the jaw.

You need to find yourself a good oral surgeon who will work with your RD. I know this is painful and I hate it for you. I see my oral surgeon tomorrow, Dr. Kevorkian :) to see what the plan is. Can't wait.Just saw this--thanks Rebecca! I could tell he wanted nothing to do with an RA patient. At this rate I am going to move to Nashville because all my doctors viisits will be there soon.
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