I am new to this site and was wondering if anyone on here has mouth ulcers and also the joint pain? I have frequent mouth and nose ulcers and also have joint pain of the hip and knees, so far the doctor dont know what is wrong with me and im wondering about the connection to lupus and mouth ulcers, hope someone can answer this question? thanks
I have lupus which is accompanied by mouth ulcers and alot of joint pain. Mouth ulcers is one thing they look for when diagnosing lupus along with joint pain I believe in 11 areas of your body. I was also anemic and had the red rash on my face but it took over 12 yrs to diagnose also my epstein-barr test came back positive. for your sake Ihope its not lupus but hang in there I.m here if ya need to talk. PS they also did a double strand dna test which came back positive for lupus. Jenny
Dear Jennyback, Just as parcelgirl just wrote, mouth ulcers are a key finding in systemic lupus, so much that they're one of the diagnostic criteria. But note that in lupus, they will LOOK like lupus under the microscope---meaning people can get various kinds of oral problems that ARE NOT lupus.
Go to the "sticky posts" (permanent posts) at the front of this Board & read the 11 diagnostic criteria for systemic lupus. You need to have 4 *sometime in your life* to be Dx'ed with SLE, meaning not necessarily all at once.
Parcelgirl noted that *she* tested positive for the anti-ds-DNA antibody. This is one of only *two* antibody-like findings that are so specific to lupus that they qualify as meeting a criteria. (Anti-Sm is the other.) BUT there are OTHER blood findings also seen commonly in lupus: Dr. Wallace, in his hardcover, lists 16! (Who'd have thought so many?!) So not having anti-ds-DNA (or anti-Sm) doesn't mean you don't have lupus. What it means is you could have one or more of the *other* blood findings... Or maybe nothing lupus-like (we hope!)
It's so complex a subject, but there are lots of articles you can read, available right from the Board here. First, there's the sticky post with a site that's great on what the tests are. Go to the top of the thread list for all the "stickies".
Plus, try the "Resources" tab above. Click it, then MedLine Plus, then Rheumatology, then lupus. Lots of info there, too.
If you think you need medical attention, I think you should go for it. You could have "just" sore joints for any number of reasons, with some kind of non-lupus mouth problem. Or, you could have something autoimmune going on. Point is, only a proper dr. could start the process of determining what is really happening.
GOOD LUCK! I hope you keep posting. Best wishes, from Vee (dx'ed in 2000 with the subacute cutaneous type of lupus, not SLE; was positive anti-Ro but negative for ANA)
Last edited by VeeJ; 01-26-2006 at 07:58 AM.
I am in the process of getting additional testing for my situation, which could or could not, be auto-immune. I have had 3 ANA tests done in the last 6 weeks, which came back 1280, 1280, and <40 (neg)!! Tests for ds-DNA, ss-DNA and RF all came back negative. I have been told that these numbers can jump from pos to neg during any given time period. I know that 'healthy' people test positive for ANA, but to me, "1280" seems awfully HIGH, so I'm assuming I have something going on, it's just a matter of 'what" (hopefully nothing serious).
Recently over the past 2-3 days, I have a white coating on the back of my tongue, which has made swallowing difficult (no pain however). So I wouldn't call them ulcers, but I have to keep swallowing due to the feeling of there being something in my throat. When I look with a flashlight, it looks like whitish-colored moss growing on my tongue. 2 days ago, I was gagging continuously and couldn't stop. I've been spraying and gargling to try to contol it, but it's still on my tongue. Is this something that may be caused by an auto-immune disorder? I thought I read somwhere that it could be, but I dunno!
I have an appointment with an ENT on Monday, and my 1st Rhumie appointment is on 2/1 (Wed). so I guess another whole round of testing will commense at that time. But for today, this tongue & throat thing has me going. Fortunately there's no pain, other than a slight sore throat due to all the swallowing.
Thanks, Pam. That's what others have said, but since I don't know what thrush looks like, and the photos they put on the internet don't really show diddly, I can only speculate! I've tried brushing my tongue, but my gag reflex is so bad, I can't even get close to doing good oral hygiene! So whether my possible auto-immune situation has anything to do with it (or not), or whether it's even thrush (or not), only my ENT will really know for sure! LOL!!
Plus (maybe) CPK (for muscle inflammation); Westergren sed rate or CRP (inflammation levels); PTT (clotting time, done in people where clotting problem is suspected).
I never tested positive for ANA or anti-DNA, the two best known tests; so my local GP (and local rheumie) kept saying NOT LUPUS. Maybe they never even looked, at first, for anti-Ro---which is what was eventually found? (I don't know.) I was anemic for a very long time, WBC was off, sed rate up---but they just couldn't understand why.
I betcha your new rheumie will re-do all tests. Make sense, actually. They tend to order the whole range of tests. Plus labs differ, too, and they may use specialized ones that can run the more arcane tests.
Anyway, good luck with your 2/1 appt. I hope you check in here again. Best wishes, Vee