This flare is horrible!!! Is this lupus sore because of the flare?

[winterbaby07]

I zoomed in on the sore on the roof of my mouth.. My tongue has been giving me issues also. Is this sore because of a flare I'm in? Also I'm being tested for Sjogrens I failed the Salivary Gland Function test horribly. The radiologist interpretation was "Consistent with Salivary Gland Dysfunction "... So I'm not sure where these sites are coming from... Any ideas?? Is this a lupus mouth sore ???

[Hidden]

I believe that, if you haven't got enough saliva to flush the daily toxins/ germs out of your mouth - especially overnight - sores and tooth decay are all going to become more problematic. Maybe best to try and see a doctor or oral surgeon for advice on saliva stimulants and additional oral hygiene measures if you can?

[MargaretGail]

I get an awfully sore mouth and tongue with various types of blisters. I also have SLE and Sjogrens and have no idea which one causes the issues

[winterbaby07 in reply to MargaretGail]

Yes it's driving me crazy I didn't know it was there until my food informed me... I've been suffering the past week .....

[fishers63]

I have the same thing right now. The sores seem to extend down my throat on one side and my face hurts. Has happened several times but never when I'm due to see the rheumatologist of course. Always tell him but he never really comments on whether it's lupus related.

[Barnclown]

hello winter baby, I can't really answer your ? except to say I get these sort of horrors any old time...not just when I'm actively flaring. as much as I wish we didn't have this sort of thing in common I'm glad you managed to get your photo & post it here....cause I now feel less alone with this...this stuff is not 'just normal mouth ulcers'

For many many years, I've been coping with vvvv similar oral erosive lesions of the hard palete (as I now know they're called, thanks to a brill periodontist). This year I got so fed up with them, that I photographed one daily from the vvvv first signs through 30 days to the scar it left once healed...boy was that tricky (involved a pedestal mirror sitting on a towel rail against the wall....my dental hygienist & peridontist flipped out: they'd never seen or even hear of such a comprehensive photographic study...HOORAY, they both said. so, I gave them the pics on a stick & now I take prints to clinics (rheumatology, immunology, ENT, oral surgery etc: they all seem very glad to see these pics). I'd love to know what tricks you got up to photographing your erosion!)

My periodontist says the whole roof of my mouth is badly scarred from this lifetime of these awful erosions. Basically, she explained, my version of this is mainly down to my sjogrens (rheumatology & my other relevant clinics have all required no biopsies, saying clinical diagnosis is enough in my case of long term sero neg sjogrens: the signs & symptoms & consistency of disease course are enough). But my brill rheumatologist had earlier examined the inside of my mouth and warned me to "take good care of my mouth" when she observed my unusually high, heavily scarred palete. I understand that my ehlers danios type hypermobility is also implicated in this high roof of mouth & erosions thing....

I'll mention another of my horrid oral symptoms cause maybe you're experiencing something similar: the medics say mine is paroxysmal haematomas of the tongue, inside cheeks & throat...these look like big ballooning blood blisters..they burst and turn into dreadful erosive lesions. One dermatologist told me these were due to a condition called angina bullosa haemorrhagica, but that was years before my infant onset lupus was finally rediagnosed in 2011 when I was in my late 50s. Now I understand these are more likely due to ehlers danlos type hypermobility affecting all soft tissues including my vascular system...hence these haematomas, which also happen in my extremities.

Anyway, back to your photo....In the first years after my lupus diagnosis was recovered, I was so busy dealing with so many urgent priority referrals to various clinics for the more severe aspects of my multi system probs, that it took me until last winter to finally have the time to consult a periodontist about these roof of mouth lesions. after all, I'd been living with these things, I call them Mouth Monsters, for decades...so they'd become normal to me. By that time last winter when I first saw a periodontist, I'd taken my photo series. She was Ab Fab: confirmed sjogrens etc. and said my probs would be a lot worse if I hadn't spent my life being very conscientious about oral hygiene. She confirmed that 3 monthly dental hygienist treatments are vital, and that twice daily home care sessions are a must (inter dents, floss, mild toothpastes & soft brushes). She urged me to use gengigel products in a prophylactic way: eg smearing my gums & roof of mouth with the gengigel gel before eating anything that could irritate or tear gums or hard palete. (Of course, it's best to avoid eating & drinking irritants, but I do so and still get these erosive lesions...and i've been on an anti inflammation diet with supplements for years, avoiding all food stuffs etc that aggravate my autoimmune problems). The periodontist also said I should bathe any actual erosion with gengigel mouthwash, and in between smear it with gengigel gel. I've followed her advice & it is helping quite a bit to minimise my version of these erosions..but I still get them....which she warned me I will...forever & ever. Basically, she explained, my connective tissues are ultra reactive & vulnerable....and these roof of mouth lesions are basically great big, very deep wounds which gradually scab & then heal over into a scar...just as any such wound would anywhere in & on the body

Over the years/decades I've tried biotene products but found them expensive & ineffective in my case. I also have been prescribed artificial saliva sprays, but not found one I can tolerate. Instead I sip fresh ginger tea 24/7...I do use oral B gel pro expert toothpaste which the peridontist said is fine. And now I'm a BIG fan of gengigel products. Otherwise, all these years, I've tried to imagine these were just normal mouth ulcers, although I now know that I do have more or less "normal mouth ulcers" as well as these erosions. Anyway, I've been treating both types of mouth lesion alike ...there have been lots of great threads on here over the years sharing advice about mouth ulcer management...from which I learned many things...but I learned nothing that actually helped with these major erosive lesions as much as it actually helped with my normal mouth ulcers...

Apologies for going on at such length...but maybe something in all that can be useful to you &/or others

Thanks again for posting your photo & question...this is very helpful to me: you're the first person I've met up with who I know really really is experiencing such huge erosions...I'd been feeling kinda out on a limb...anyway, I do hope you can get to the point of feeling you understand your version of this

XO🌻🍀

[Liberton]

Hi Winter Baby I get very similar symptoms which also include swelling of throat, lips - top one in particular and swelling on the side of my face, usually the left side.

This seemed to be connected with foods I have become allergic to over the years. These include anything with even a hint of mustard, sun dried tomatoes, stock cubes even organic ones.

[lupie46]

I have sores. All lupus related. I also have geographic tongue which really hurts. Oral consultant gave me steroid mouthwash for bad times. Lemon, chilli, Dairylea are all aggravating. Good luck with getting sorted.

[Roanna]

Go to your Dentist and get it checked out, it looks like a type of viral ulcer from what I remember when I worked in dental, usually stress brought on and goes away in a few weeks. Warm salt water rinse and numbing gel on the area can help calm it somewhat but mouthwash can be a bit harsh sometimes. good luck.