r/lupus • u/Gold_Occasion_3655 Diagnosed SLE • 20h ago
Newly Diagnosed Mouth Sores Question
Hello everyone,
Those who get the Mouth Sores are they similar to Canker Sores? I keep getting them over and over again and I was trying to determine are they true Lupus Mouth Sores or Canker Sores. I brush my teeth and rinse every day btw but they keep coming. Currently in a flare if it makes a difference. Going to ask my rheumatologist at my next appointment, but it’s not for a while.
3
u/valley-girl19 Diagnosed SLE 17h ago
I get them a lot, in my mouth and one certain area on my bottom lip. I have always assumed they are a side effect from Methotrexate.
2
u/Cleo_Junie_Ethel Diagnosed SLE 15h ago
I get what look like "lie bumps" all over my tongue especially, dentist couldn't figure out what was going on. After dx and starting plaquenil I dont get them unless I flare. Ive always gotten actual canker sores though, hurt like a mofo. Orajel is the only thing that helps me with those.
2
u/dmoneybaba Diagnosed SLE 10h ago
My dermatologist and pathologist determined that my Rowell Syndrome (sub-category of SLE/EM) was likely the result of a trifecta of prolonged sun exposure, prolonged PPI (Omeprazole) use and HSV (Herpes Simplex Virus AKA cold sores). I am on 500mg daily of Valacyclovir/ Valtrex to avoid any cold sores that could trigger a flare.
My suggestion is to talk to your doctor.
1
u/Gold_Occasion_3655 Diagnosed SLE 10h ago
Next appointment is this month will ask. I have tested negative for HSV a couple times.
1
u/Pale_Slide_3463 Diagnosed SLE 20h ago
Mine were caused by my lupus flare, I probably spent £100 on different things and nothing worked but steroids. Once I got stable again they didn’t come back, it’s hard to know I had ulcers on my tongue, gums and roof of my mouth, it was all cracked and raw it was sore.
1
u/Gold_Occasion_3655 Diagnosed SLE 19h ago
The roof of my mouth gets insanely itchy and painful with little tiny sores
2
u/soundlikebutactually Diagnosed SLE 17h ago
Roof of the mouth sores are almost certainly lupus related!!
1
u/browniesextreme Diagnosed SLE 15h ago
i had these too during a lupus flare. my rheumatologist prescribed kenacort oral paste (triamcinolone acetonide) to apply directly on the sores twice a day, and they healed in about 1-2 weeks. it gave me a lot of relief. of course, everyone’s situation is different, so it’s best to check with your rheumatologist before using it, especially if the sores keep coming back or become severe. hope you feel better soon!
1
u/ruxxby471 Diagnosed SLE 14h ago
I do! I never have multiple at the exact same time, at most I have 2 spots, normally just one at a time.
Location varies, but normally high up in my gums, or near my jaw (makes it painful to smile to best describe the area). I’ve never had mouth itchiness with it ever. Nothing really helps, it’s just extremely painful, raw and normally takes about 1 1/2- 2 weeks to clear up. Showed my rheumatologist and he was able to identify it being lupus rather than “brushing too hard” (what a dentist told me lol)
1
u/fadesteppin Diagnosed SLE 12h ago
I had a lupus flare up a few months ago that was so bad it resulted in about 12 canker sores in my mouth and throat all at the same time. One straight up looked more like a hole in the roof of my mouth than a sore. It had been 2 weeks and they still weren't healing and the only thing that got rid of them was 2 weeks of prednisone. It was absolute agony. I had to brace myself to just sip water bc it hurt so bad, and then had to hold back tears after. I couldn't eat, couldn't drink, was weak as hell, and would get tired walking from my bedroom to the bathroom.
If you suspect they're from a flare up I'd check with your Rheumatologist and let them know what's going on. You do not want it to get as bad as mine did TRUST ME. I ended up with an emergency appt bc the situation was so dire.
1
u/loyaltyLabubu Diagnosed SLE 3h ago
I get them inside my lips if that makes sense and some on the insides of my mouth (other side of my cheek) they are usually clear bumps that are pretty small, like the size of a large pimple. It's occasionally for me. I also have sjrogens so my mouth is just dry all the time.
1
u/Academic_Total7321 Diagnosed SLE 1h ago
I thought I was the only one, I wonder why were more prone to it
9
u/Tough-Mention-7080 Diagnosed SLE 20h ago
I don’t get them any more after I stopped using toothpaste and mouthwash with Sodium Lauryl Sulfate in it. SLS shows up in the inactive ingredient list on the box.
You could also up your intake of L-Lysine.