Sore mouth!: Hi Folks, I wonder if you have any... - LUPUS UK


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Sore mouth!

redmaggie profile image
29 Replies

Hi Folks, I wonder if you have any suggestions for me. I have UCTD and one of my symptoms is dry eyes and mouth. I do make some saliva but my biggest issue right now is a sore mouth, especially my tongue. I don't think its thrush and there are no ulcers right now, just a constant nagging soreness which is impossible to ignore. Sips of water relieve it for just a minute or two. I also have geographic tongue which has come and gone before but now seems like a permanant fixture. Mouth washes are unbearable and I use biotene toothpaste. Thanks!

29 Replies
diane46 profile image

i have this problem to my doctor gave me steroids to dissolve and use has w mouth wash it dose help also igloo its a bit thicker and stays on the ulcers when my mouth is really bad i eat rice pudding and drink milk shake because of the hunger but i am still looking for thing to help i have lost 3 stone because of my sore mouth hope any of this helps

redmaggie profile image
redmaggie in reply to diane46

thank you!

cross2 profile image
cross2 in reply to redmaggie

My husband had geographic tongue and the doctors discovered it was the tannin in the tea which caused it. He hasn't had tea in years now, and had no re-occurance. Just incase it may help you a little.

redmaggie profile image
redmaggie in reply to cross2

thanks for your response - that's so interesting. I only drink green tea but that does have tannins too. It will be a struggle to go without but it is certainly worth a try. I wouldn'd be surprised if it is caused by some thing i'm putting in my mouth!

weathervane profile image

Have you tried gargling with warm salt water with a teaspoon of cider vinegar, i find this can give some relief 🤗

redmaggie profile image
redmaggie in reply to weathervane

thanks for the tip, I'll give it a go!

Lizard28 profile image

Try Salivax pastilles, they are good for dry mouth or as someone said,go to GP for dissolving steroids to rinse in mouth. I’d also visit your optician and they would advise you on what drops to take, I use Zailin night gel only as I had plugs put in my eyes which was a game changer for me.

redmaggie profile image
redmaggie in reply to Lizard28

thanks for the suggestions Lizard, I've tried all sorts of stuff so it's helpful to hear what works for others :) I haven't used Zailin gel - currently I'm trying carbomer gel and its only £2 a tube. Unfortunately all the night ointments cause my eyes to swell up, I think it's the lanolin.

OldTed60 profile image

you might want to try switching to an SLS free toothpaste if you haven’t already. I have lichen planus and sjogren’s (also scleroderma) and use steroid mouthwash for ulcers. A sjogrens expert recommended that I try a steroid inhaler targeting it at my ulcers as this gives better relief apparently. But they also advised me to cut SLS toothpaste and I have and had no more ulcers or lichen planus flares since although mouth still feels horrible.

redmaggie profile image
redmaggie in reply to OldTed60

Great tips thanks. I use biotene products, which dont have SLS....but will see if I can get hold of the steroid mouthwash.

Sus2372 profile image

hi, I have sjogrens too. I have found that when I am lacking in essential vitamins that may tongue begins to have mouth ulcers and sections that peel off. Perhaps you can contact your GP and ask for a full vitamin and mineral blood tests to rule out Vitamin D and other deficiency. I’m classed now as being micro nutrient deficient in pretty much every vitamin and regularly go for a vitamin infusion in the hospital. Hope they find out the issues causing the extra symptoms.

redmaggie profile image
redmaggie in reply to Sus2372

Thanks Sus2372 thats interesting about the vits. I'm low weight and the Doc says its probably malabsorbsion - so that would also point to deficency. I take a raft of clinic recommended suppliments but maybe not the right ones!

Djlr profile image
Djlr in reply to Sus2372

Lack of Vitamin D3 is very bad for ANYONE living with an Autoimmune Disease.

All symptoms worse (even Covid19 worse in patients with LOW VITAMIN D.

SufferingMike21 profile image

Hi I suffer with dry sore eyes and similar mouth problems. I have had plugs inserted in my tear ducts at eye hospital and since then eyes have improved so much as tears etc keep eyes lubricated as ducts now been blocked.. I use hypo care lubricanting eyedrops as required which I have on repeat prescription.

For my mouth ENT prescribed disolvable steroid tablet which I dilute in water rinse and gargle and spit out.

This I use only when needed but touch wood really works well.

Hopefully this will be of some help to you. Mike

redmaggie profile image
redmaggie in reply to SufferingMike21

Thanks Mike. Did you find it difficult to get these treatments on the NHS? presumably only specialist departments. At the moment I get Hylo Forte on prescription but I'm buying everything else which adds up when you try a range of things.....Xylimelts are very good but not on the NHS sadly!.

SufferingMike21 profile image
SufferingMike21 in reply to redmaggie

Hi yes through consultants I'm lucky to have an nhs exemption card so dont pay for prescriptions..Ask at your next appointment to see if your eligible for a exemption card .

Hope you feel better soon

redmaggie profile image
redmaggie in reply to SufferingMike21

Cheers! One of the benefits of being my age is that I get free prescriptions!

Limerick profile image

Hello, I to have this. I’ve been dx with dry mouth syndrome. It’s constant. I don’t have visible sores but it feels like I just ate a jalapeño pepper all day. Dehydration spikes it. Sugar too. I was told by a specialist that it could go away in its own or never 🤦🏻‍♀️

Djlr profile image
Djlr in reply to Limerick

Try L-Lysine its amino ACIDS help To Heal Skin Tissue. (1000 mg)

Helps me anytime I get mouth irritation from Lupus.

redmaggie profile image
redmaggie in reply to Limerick

sorry to hear that, lets hope it does go away. I have the same problem as you but also salty foods & alcohol make it so much worse.

Djlr profile image

UCTD, along with Lupus, both have crossover symptoms with Sjogrens Syndrome. We learn to treat these issues as all other Lupus Symptoms & discussion with our Doctors.

- DISCUSS “any mouth issues” with “Dentist” & Rheumatologist.

- MOUTH RINSES for DRY MOUTH like BIOTENE or ACTS “Dry Mouth” are helpful.

Article above goes over other products that help with Tongue & dry Mouth problems.

- L-Lysine helps with MOUTH SORES & heals skin (1000 mg) - it helps me ‘almost immediately’ if I feel any discomfort along with baking soda rinses.

- Any SORES not HEALING within week, must be SEEN. A Friend had a sore & drs didn’t take seriously (in 2020) & they just thought it was Lupus Mouth Sore. She should have seen DENTIST. It was SQUAMOUS CELL CARCINOMA. 2 Surgeries, Radiotion & chemo - now cancer Free.

I hope these help until yo are able to discuss with Dentist & MEDICAL DOCTORS.

redmaggie profile image
redmaggie in reply to Djlr

Thanks for the info Djlr😀

Limerick profile image
Limerick in reply to Djlr

thank you so much. I’m also having g really bad red burning eye issues. I’m definitely going to look into this. Is it a perscription base supplement?

Maureenpearl profile image

When I was first diagnosed with Mixed Connective Tissue Disorder in 2006 I was told to chew sugar free gum during the day to keep my mouth fresh and generate saliva.

I now use Xylimelts stick on melts at bed time and this helps with the dryness of my mouth during the night. I also have the lozenges and the chewing gum.

BonnyB profile image

I've found pastilles on prescription help. Mine are sailivix . X

Kaboom1250 profile image

I have this as whelp--it worsens with stress...My PCP out me on maximum ,prescription only Folic helps a bit (on Methotrexate as well). My heart to you.

redmaggie profile image
redmaggie in reply to Kaboom1250

thanks ! I have bought so many eye and mouth preparations over a few years but am yet to find the one that gives good relief. I will try to be optimistic. xx

Hiya, I use eye gel clinitis which helps my dry eyes. I hope that helps.

redmaggie profile image
redmaggie in reply to Riselikeaphoenix_123

Thanks, I'll give it a try 👍

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