Advice re sore roof of mouth

[heather1983]

Does anyone have any suggestions for a remedy for sore roof of mouth? It feels as though its burnt. I often get cold sores on lips and in nose (I use Zovirax), and occasionally get ulcers on tongue and inside of mouth (bongela). Not sure what I can use this though???

[EOLHPC LUPUS SUPPORT Volunteer]

Am vvv much feeling for you heather. I just checked your profile info before replying to your question. My impression is that you & I have quite a lot in common. I've been managing this sort of stuff all my life, with it getting increasingly more problematic as the decades passed. In my 50s, Drs finally discovered I'd been diagnosed with infant onset lupus, but that diagnosis had been lost when I moved to the UK at 20. I'm now 61.

The roof of the mouth sores I've been managing all these years are more like eroded lesions than average mouth ulcers. They can be quite big (up to 2cm across) and leave permanent scarring when they heal. i also get all sorts of inflammations & ulceration on & in the other soft tissues of the inside of my mouth, including blood filled oral blister-like lesions which burst and turn into ulcers. Mostly my ulcers & lesions heal within 21 days if I treat them intensively. I avoid eating foods that are rough or tough, cause they can injure soft tissues and start lesions etc: crackers, hard crusted bread etc

I also get nasal lesions & boils. The lesions inside the nose are treated with regular use of OTC neilmed sinus rinses & prescription topical antibiotics (bactroban for years, then naseptin when I became resistant). Outside, like on the nostrils I use a prescription steroid ointment like betnovate.

My Drs & dentists & periodontist tell me these symptoms are due to my version of SLE + sjogrens + ehlers danlos type hypermobility (I have a vvvv high palate)

Having tried virtually everything over the decades for my oral sores, ulcers etc, here is what helps me: first & foremost is rigorous daily oral hygiene with oral B toothpaste or biotene.....flossing & using interdent mini brushes a.m. & p.m.. Otherwise the best OTC treatments I've found are gengigel mouthwash & gel, biotene artificial saliva spray. Zovirax is what I use for cold sores too. Am sure you know it's v important to treat sores/ulcers/lesions immediately there is any hint they are starting up. The best prescription med in my experience is the topical steroid adcortyl in orabase (triamcinolone), which is no longer available in the UK, so my Drs write me a prescription & I buy it when abroad....sometimes the steroid triamcinolone is replaced with kenalog. But I also have a prescription steroid inhaler which I use directing the spray onto the ulcers.

Hope there is something helpful in all that

Take care

[Atibrat Moderator LUPUS SUPPORT]

I get this often first sign of a flare or that I need more rest. My dentist said do not use mouth wash or mouth rinse because it will cause more irritation. She said use warm salt water rinse but I only do it once or twice a day or it too can get over irritating. I drink more water and stay away from food that will irritate my mouth. My dentist says when you have anything going on in your body your mouth is sensitive and shows signs easily. Also sometimes things like biotin products to reduce dryness help. Also good oral care brushing and flossing 2 times daily helps. Hope this helps.

I did not see barnclowns reply before I did my reply but agree with all she said. I do not get them that bad the last 4 years since I am on Plaquinel and 2 mg of prednisone a day. My mouth, butterfly rash along with itchy scalp and hair loss are all first indications my disease is becoming more active.

[heather1983 in reply to Atibrat]

thanks barnclown and atibrat,. im currently on 10mg prednisone, and due to start plaquinel next week (unless rhuematologist decides it's something other than lupus) so hopefully the ulcers will clear up.

[lupus-support1 Administrator]

Mouthwash which contain alcohol should be avoided as this will irritate. There are good mouthwashes without alcohol and this can be very helpful for dry mouths, either through medication or Sjogren's Syndrome.

If your mouth is dry, try chewing sugar free gum or suck (not crush) ice.

Your doctor and dentist are the people to ask.

Be well!

Ros

[milkwoman]

Because of my Sjogrens I can get mouth sores, which are more like lesions as described above.

The minute I get ANY sort of irritation or cut, I know I have to be careful lest it grow into a major thing lasting weeks.

Fir prevention, I use Biotene Oral Rinse every time I brush. If my mouth seems dry, I use the Biotene Oral Balance Gel.

When I do get a sore, I find that Ecodent oral rinse works well to cleanse the wound. I also use protective numbing gels (like ambesol or Canker-X, etc. ) to ease the pain, especially before eating. Avoid spicy finds that will irritate sores.

I will say that once I started using the Biotene products regularly, I haven't had a sore in a long time.

[heather1983 in reply to milkwoman]

Thanks for your reply milkwoman. Where do you get the biotene products from? Do I need a prescription?

[milkwoman in reply to heather1983]

No, not prescription. I'm in the USA. I can find them at any drugstore, grocery store or even, larger department stores that have a health & beauty department.

There is a UK site for Biotene: biotene.co.uk/Products.html

They may have a "where to buy" link.

And they are on Amazon UK (product names seem to be a little different): amazon.co.uk/gp/aw/s/ref=is...

[heather1983 in reply to milkwoman]

Thanks for the link, i'll take a look now

[cctexan]

My ENT doc said to avoid any home remedy like salt water or aspirin ontevsore ( yikes) I have ad one for three months though that three drs have tried treating with various antibiotic ( viral and bacterial) and steroid paste.

Now he is doing biopsy as the ulcer on the underside of tongue is still open. I must admit I am scared

I ve been using anything non alcohol, and he said use things with xilotyl as that is moisturizing and not burning. Plus to chew sugarless gum to keep saliva flowing. I too use biotene spray and the gel at night along w a mouth guard which protects from any accidental tongue bites.

Trauma tends to cause some of my sores on tongue or cheeks now. I think its swollen. No kidding 😅

Hope you have a beautiful day... We are flooding still Houston. The city has shut down in some areas including hospitals on Mon. Due to12 inches of rain overnight.