I suffer from horrendous, painful mouth ulcers, d... - LUPUS UK

LUPUS UK

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I suffer from horrendous, painful mouth ulcers, during a flare. Are they an SLE symptom and any suggestions for effective treatment, please.

17 Replies
17 Replies
esky profile image
esky

Hi

Yes sorry to say they are a symptom of a Lupus flare. I usually get them in clusters of around 10 when im having a bad flare.

I use bongela for mine. I used to use Daktarin Oral Gel which is brilliant but i dont know if this can be used due to our meds. U will need to check also there is Clove Oil - but again check before usage.

They can be sore but try not to rub them with your tongue makes them worse (trust me harder than it sounds, tongue has a mind of its own lol). And the old cliche paracetamol for the pain. U could always try the not so nice rinse your mouth with cool boiled salty water too - wards of infection - so they say. Hope this helps. All the best x

Gillyg profile image
Gillyg in reply toesky

Use Biotene mouth wash, gel and toothpaste. It keeps the mouth clean and gives a lot of relief. I was recommended a few years ago by an oral specialist and always use them. Sometimes doctors will give prescriptions otherwise Boots do them. Really good for long term relief.good luck ulcers are not nice. Do you have SS.? Having a dry mouth doesn't help.

esky profile image
esky

Hi

Yes sorry to say they are a symptom of a Lupus flare. I usually get them in clusters of around 10 when im having a bad flare.

I use bongela for mine. I used to use Daktarin Oral Gel which is brilliant but i dont know if this can be used due to our meds. U will need to check also there is Clove Oil - but again check before usage.

They can be sore but try not to rub them with your tongue makes them worse (trust me harder than it sounds, tongue has a mind of its own lol). And the old cliche paracetamol for the pain. U could always try the not so nice rinse your mouth with cool boiled salty water too - wards of infection - so they say. Hope this helps. All the best x

in reply toesky

Thank you for your response. I'm using the bonjela but will try the salt mouth wash and look into the other remedies. Just happy to talk with people who understand.

esky profile image
esky

I know what its like hun its horrid. Just remember there are loads of us having the same problem so u are never alone. Also if the mouth ulcers get really bad your doctor can prescribe stuff too. take care xx

summer32 profile image
summer32

anbesol liquid or gel is good x

twist1 profile image
twist1

Hi Summer32, My dentists recommended Difflam but it has to be prescribed by a doctor or dentist - I have not been able to try it yet but got some for the next flare. I was also told not to use Corsodyl as the hygienist says it stains your teeth and does not help with ulcers and sores but always get checked for gum disease just in case

garykeanu profile image
garykeanu

Hi I use chlorhexidine antiseptic mouthwash it keeps mine from getting to serious good luck.. Gaz

dgleds profile image
dgleds

slippery elm bark made into a tea/gel is good for mouth sores...but better ask doc if its ok..its a herb

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

You may find this article we published last year helpful. It compiles lots of tips from people with lupus;

healthunlocked.com/lupusuk/...

shellycop profile image
shellycop

Hi I have fibromyalgia, and 1 dr says sle lupus other 1 says not lol. I have horrendous ulcers on gums and tongue. Tried bongela and anbesol to no effect. Doctor gave me difflam mouth wash yesterday and feels better already. Hope this helps x

Thank you for the advice-much appreciated! I'll try some of theses remedies and see what works best for me. x

Orchidlily profile image
Orchidlily

"Adcortyl in Orobase" from the pharmacy works brilliantly. It's a paste that you put on the ulcer at night, not the most pleasant but i find the most effective and it works quickly whilst you are sleeping. Good Luck.

gillmanum profile image
gillmanum

I have the same painful mouth ulcer for over 30 years caused by auto-immune BEHCET'S SYNDROME. I had solved my painful symptoms from 2005 thru my 12 years studies with natural herbs and foods. For the past 8 years, I have never recurred any ulcers in oral, genital n stomach. I am willing to give you the herbal extracted tea containing sea cucumbers, koreran ginseng roots, some nuts, flowers, seeds, leaves, fruits, etc at free.

If you are ready to cure and care of ulcers, please let me know by e-mail. I am willing to your pains forever.

Black_Kat profile image
Black_Kat

I spent 3 months in hospital this year after having the worst mouth ulcers ever but these were caused by a severe outbreak of oral candidiasis (thrush) - however, I got the best relief using Frador - you can pick it up in Amazon - not much in a bottle but relatively easy to use, & does ease the pain longer than Bonjela I think.

Might be worth getting a mouth swab done by your GP to check if you don't have a similar outbreak or even a herpes one - I never knew until this year that you could have herpes in your mouth!!!

Hope you get ease soon - feel for you :(

in reply toBlack_Kat

Thank you so much! They are definitely subsiding, but then I have really taken it easy over the past 2 weeks-done very little indeed! My mum used to buy Frador when I was a child-didn't know you could still get it! I'll get some for next time-this is the second time I've had a big flare up (only diagnosed with SLE in April.) I might try some of the other remedies too, but will also go to my GP. Hope you are feeling better. This whole Lupus thing is such a nightmare of unknown quantities! Good to have this site for support though :)

angus50 profile image
angus50

Hi

I also suffer from mouth ulcers and rather than use more meds I use tea tree oil in warm warm hold it in your mouth and do not rinse just spit out. I do this every day and so far it has cleared them up very nicely hope this helps.

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