Hi. I'm new here, and waiting for a possible dx of SLE. But, in the meantime, I have a question which, even if it's not SLE, you all may be able to help me with. I have several sores in my mouth - one off and on for over 15 years. Anyway, I digress. Because of these sores (I think), I have an awful taste in my mouth, and an altered sense of taste (food totally does not taste right or good). Is there anything (prescription or over-the-counter) that can help with this issue. Even if it's not SLE, I thought that someone here might have a suggestion.
If it does turn out to be SLE (which I 1/2 hope it does (because then I will at least understand what the heck is going on) and 1/2 hope it doesn't (cause I am not really looking forward to dealing with this disease for the rest of my life)), I will introduce myself further.
Raddant, hi & welcome. One of my books has old-fashioned reco's for SLE mouth ulcers. (1) Buttermilk gargles. (2) Hydrogen peroxide diluted in a few ounces of water, gargled & spit out several times a day.
Another is Orabase dental gel, a topical steroid (a drug store item, I think).
If those don't help, I'd probably ask my dentist & doctor to check the sores, on the chance they could be something else entirely.
The author says that systemic meds, like antimalarials and steroids, also help oral ulcers, but a formal diagnosis would be needed (duh, obviously ).
I bet many here can appreciate your wanting & yet not wanting the diagnosis. But please know that proper treatment and follow-ups can make such a difference in the quality of life, and can lower your odds of serious complications. Plaquenil (antimalarial, the lightest class of meds) has helped me. I still have pain & fatigue remaining, not as bad as before; but my nastiest problems, that stopped me cold, have been well-controlled.
Is this your first round of tests, or have you been tested before? I hope you keep posting! Sending my best wishes, sincerely, Vee
Last edited by VeeJ; 03-18-2012 at 04:43 AM.
OK - guess I should have been more specific in my original post. I have now seen 3 periodontists for the one sore that has been there off and on for at least 15 years, besides my regular dentist. Have now seen my regular doc for the newer sores on my cheeks (about 3 months or so now) and just last week saw the rheumotologist. Don't have another appointment with her for a month (don't really want to wait that long for my test results!). Will be calling my regular doctor tomorrow due to swelling in my ankles and feet. He's supposed to get the results also, so maybe he might be able to tell me what's going on.
Never been tested before - never even crossed my mind that my joint aches might be anything more than getting older (although 45 is NOT old) and being quite overweight. Actually the fact that I can barely taste my food right now seems to be helping in that respect.
The only "bright" side that I can find right now is that the cholesterol medication that I have been taking to control chronic diarrhea which is a powder that you mix in liquid and tastes nasty, does not taste so bad. I guess you have to take the silver linings when you find them, right?
Raddant, I had episodic, horrendous GI bouts for 20+ years, to the point of being hospitalized. My local drs. and specialists never considered lupus, to my knowledge, until I started yammering that my arm/back rashes seemed to be sun-induced. Yet I read later that GI problems are very common in SLE. And to my surprise, that was the first of my chronic problems to recede dramatically once I started Plaquenil... and not a moment too soon!
Since you've been under periodontist's & dentist's close care for years, I see why you suspect some cause beyond their purview.
Have you read the sticky posts (permanent info posts) at the top of the thread list? The "alternative criteria" knocked my socks off: I matched many, from childhood on. Let us know how you're doing, when you have time. Good luck, from Vee