Does anyone else have this issue?? Extreme mouth sores

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I've been dealing with reoccurring mouth sores for almost seven years with no official diagnosis. I've seen nine physicians and none of them have offered any real insight. My blood work is always normal and I have no other symptoms. The last couple have suggested a possible auto immune condition. I do have a family history of hashimotos and rheumatoid arthritis but nobody in my family has ever had these extreme mouth sores.

The sores cover my entire mouth: cheeks, innner lips, under my tongue and on my gums. They are extremely painful and it sometimes gets to the point where I can't drink water. They are large and white with irregular shapes, sometimes just large patches. My mouth is not dry and my glands are usually swollen as well. I've had no treatment other than pain management. I've tried to cure myself by trying different diets: vegan, gluten and sugar free, I've changed my toothpaste to a mild brand and nothing works. Does anyone else have this problem? I tried to add a photo but I can't. Thanks

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4 Replies

  • Posted

    Hi. Poor you. I sympathise. I have Behcet's which is similar to Lupus and ulceration is a problem . Your problems do sound auto immune and sadly this area is very tricky and underdiagnosed. Took me years to get a diagnosis.

    What should help with ulceration, if you could get a doc to prescribe it, is a steroid asthma inhaler. Not to be inhaled but sprayed over the ulcers. This helps massively. There are other treatments too. Ulceration is not a big feature of the disease for me personally but I know others who have major issues. I will ask for advice from them on it. But the steroid inhaler always worked for me. I will post back on that.

    But obviously you need to get on board with a good doc who can diagnose you. You say you have seen a lot of medics which I am sure you have but you don't mention what their particular discipline was. Have you seen a specialist in vasculitis?

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  • Posted

    Difflam spray us mentioned by my help group and someone else mentioned being told to use Beconaise on them which is a steroid nasal spray available over the counter. I use that for when I get inflammation in my nose just to spray over the sore area. It dampens down the inflammation.
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  • Posted

    Severe Canker Sores

    Avoid citrus.

    Check for allergies.

    You may be vitamin or mineral deficient... folate (folic acid), vitamin B-6, vitamin B-12 or zinc.

    You may have an underlying infection.

    Steroid ointnent maybe very beneficial or a mouth rinse containing the steroid dexamethasone. Another alternative is lidocaine for the pain Lastly, oral steroids.

    Non prescription medication:

    Benzocaine (Anbesol, Kank-A, Orabase, Zilactin-B)

    Fluocinonide (Lidex, Vanos)

    Hydrogen peroxide (Orajel Antiseptic Mouth Sore Rinse, Peroxyl)

    When you drink water, drink warm water.

    I hope something in this list helps you out ..you must be miserable

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  • Posted

    Yes miserable. These sores can be so debilitating. And just reading your post again, do you have other issues or is it just mouth sores?
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