Lesions on tongue with whiteness

[SunshineFarm]

Does anyone suffer with lesions and whiteness on their tongue during a flare up.

Its really sore.

I have discoid lupus.

Thank you for your support.

[DJK99]

Hi SunshineFarm - could you possibly post a photo? thanks

[SunshineFarm in reply to DJK99]

It’s not pleasant but here goes

[DJK99 in reply to SunshineFarm]

Hey SF - That looks fine to me. Mind you, what does your rheumy think? Or your dentist/hygienist? The latter is quite shocked by the state of my mouth (moved 1.5yrs ago, so new one). Mine looks like that all the time, since I was young... it looks like you need to brush your tongue everyday, and you're just off loading toxins... well, that's what I used to think.... ;). I think mine gets much worse if I've had a couple of drinkies (not so much these days!) and put it down to the fact my body is getting rid of the bad stuff. Tongues are great barometers of health... well, like our nails, skin.. etc. It's been like that all my life, and only looks clearer when I've gone on a fruit fast for a few days - the body is clearer of toxins then. My tongue used to crack and have lots of sores but much better when stopped working and was on methotrexate! Here's one of the photos from 2017 that wasn't as bad as some. Looked like I'd put my tongue in a shredder ;)! Quite sore too. I do get nasty red sores with white centres and red dots as it heals on the roof of my mouth, they go quite deep and make eating very difficult. On the gums too - do you get any of that? I think it's all quite common for lupus etc.

Actually I have had Sjogrens stuff all my life (and recently been rediagnosed properly from 2017) - have you got that too? Very dry mouth and tons of cavities. Plus I get something called tonsil stones! Revolting. Had them since a kid (am 58 now!) and didn't know what they were until looking it up recently when I had another one... v sjogrens.

Have a look on the Lupus UK website for their information on mouth stuff.. but I'm sure many will respond on here as all so helpful. If you have dry mouth and eyes etc, might be a good idea to read up on Sjogrens..

Hope that helps... and things improve! Deb

[Freckle1000]

Mouth ulcers on the gums - roof of mouth- is a good initial sign of me having a flare ( SLE ) I've gotta assume ulcers would turn up in the tongue too ? Some people have them in the nose. Mine are usually flat indistinct- mildly stingy white things.

Last time I was unsure - so I got my GP to diagnose them because they're near close to invisible with me - but a good outward warning sign that other bits of me might be flaring.

[DJK99 in reply to Freckle1000]

Hey Freckle - do they look like this? I was extremely run down and had them like this on and on for months winter 2019/2020. Soup city. I also get them up my nose... awful, especially if they are near the nostril... you can imagine.

[Freckle1000 in reply to DJK99]

Hi DK. I have some pitiful eyesight at the moment - but can see the discoloration changes from normal to white.

I'd go to you're GP - see what an official inspection reveals.

If they are mouth ulcers- then you'll probably have to politely explain 🙄😖 to the Doctor that it can indicate a lupus flare and you'd like this checked out.

Unfortunately as patients were all annoyingly individual in how our illness presents -

but I'm reasonably half sure generally speaking that mouth ulcers are caused by Lupus - and for me at least is a good external warning sign ( I don't have much else but rosy cheeks and ulcers for this ) that my delightful T cells are having a rummage around where they shouldn't be.

It's really important to learn what you're individual illness signs and patterns are - so this would be a good opportunity to see wether that impresssive gob of you'rs is as good a crystal ball as mine.

[DJK99 in reply to Freckle1000]

Thanks Freckle. I was diagnosed with “since birth” moderate SLE and subsequently retired on ill health grounds in 2017 but my rheumy downgraded me to lupus like syndrome last oct which made no sense as no change in all my symptoms - was just had never been pos for ANA. I was quite upset. Waiting for appt with Dr d’cruz of london lupus centre now. Rheumy said tons of different autoimmune diseases cld be causing all my symptoms. It’s vast...! Anyway, c’est la vie. The methotrexate does all it can but can’t go higher prescp to try and halt the widespread inflammatory arthritis due to autoimmune neutropenia and v low complement 4 and 3. Got awful right hand forefinger trigger finger waiting for muscular/skeletal appt right now. My whole bod has obvious lupus, sjogrens and potentially sclero symptoms.

Thanks everso for writing. Does your mouth look like mine when flaring? If u look at the photo on yr computer and enlarge the pic it might help? So sorry bout your eyes. X

[Freckle1000 in reply to DJK99]

Sorry - already enlarged the image - doesn't help. The eyes are quite bad. Good luck with you're appointment and with Dr Cruz.

I really hope you get to the bottom of everything.

💕💜💕

[Salzer]

Hi SunshineFarm. I get frequent lesions/ sores on my tongue along with geographic tongue. Short lived, but often painful. One rheumatologist saw some pictures of them and said they look lupus-like. I have UCTD. I recently saw some pictures of 'Covid tongue' and it looks very familiar! If you Google it you might see some similarities. Of course they don't know what causes the covid one yet. Or how to treat it. S

[weathervane]

Could it be thrush ? Other than that im not sure . Pineapple is meant to be good for clearing the tongue, also rinsing with salt water and cider vinegar. I found a consult with pharmacist of help when i had thrush when i had course of biologics

[Hidden]

I have stills not lupus but there are similarities and yes I have constant sore throats with visible yellow patches. GP says it’s in my head.... NOT! Pharmacy recommended Tyrozets and they do help, they are counter only so you’ll have to ask and double check again other meds. Hope they can help you.

[AmyJ3]

Hi Sunshine,

You always should go to your dentist or GP to assess things like white patches/soreness/frequent ulcers inside the mouth. You may have better luck with your dentist as they are familiar with subtle changes in the soft tissue and will be able to provide advice or refer you elsewhere if they feel there is a problem. There are many reasons for soreness in the mouth and it can include autoimmune conditions (a whole host, not just lupus, and we all are very familiar how autoimmune diseases tend to gather up in our populus) but sometimes it is for another reason, like low folate, eating too many spicy things, sometimes completely and utterly unknown!

No point guessing, may as well see what they say.