How do I Stop the sores?

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the area on my tongue where i have OLP keep developing sores because the skin is very sensitive and the friction from talking and chewing keeps creating new ulcers,  im going on a liquid diet on and off constantly and my weight keeps dropping . why does this keep happening?  the only thing that stops the sores is the laser but no way in hell im going through that again - this is a total nightmare.  i cant eat and i am wasting away 

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  • Posted

    Jason, I wonder the same thing.  My mouth has been inflammed since February with perhaps 1 week during the whole time that I did not have sores.  I am currently doing the Autoimmune Paleo diet, anti inflamatory supplements and the pain has lessen but not gone away.  
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  • Posted

    Jason05355, i too have had and am still suffering the same as you , now i found a MOUTHWASH that is an anistic based wash so i use it before i eat, i got it from my local chemist shop, it is made up of Lidocaine, Malox,and Calpol, it is just a mouth wash so dont swallow it, it helps me .... 
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  • Posted

    Jason, While you are going through this, I think you should drink using a straw and maybe invest in some energy drinks, something like Complan, to ensure that you don't lose any more weight. Who are you seeing about this at the moment? I remember you mentioned a new doctor, but I cannot quite remember.  In your shoes, I would try different physicians and various types of medicine, at this point you have nothing to lose and everything to gain, but you must try not to get too depressed, I realise it is hard and only people that suffer from this condition understand how grim it is....(hugs)
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  • Posted

    Jason,

    Has your doctor prescribed a steroid mouthwash for you like Dexamethasone?  The other possiblity is to go on systemic steroids for a while.  Mine always came back after the prednisone pills went to 20mg or less, but the mouthwash gave me between 50-75% improvement and I could use that longer term (never remission like the pred though).  My oral pathologist wanted to do Azathioprine last pred go-round, but my liver numbers were wacky so we did pred and Plaquenil.  Pred worked again, but Plaquinel was worthless.  Now liver numbers are good and I want to try that and see if it works.

    I ate a lot of ice cream when I had leasions all over my tongue, roof of mouth, checks and exfoliated gums.

    Just tried a new Xylitol mouthwash and toothpaste.  Hope it works some.

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  • Posted

    its at the point now where i cant even chew soft food because any chewing motion instantly creates a new ulcer.  the area is that delicate.  how am i supposed to eati? i can baby it for a few days and eat liquids,use the steroid, it goes away - then the second i try to chew something solid it comes right back.   
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  • Posted

    Jason, I would talk to my doc (or find another if this one won't help) to get on oral prednisone or azathiorpine give how serious this has become.  When I first developed the oral LP, my tongue had sores, the roof of my mouth, the inside of my cheeks and gums were painful and red from the skin being stripped off and all I would eat was ice cream and protein shakes because they were liquid and cooling and it hurt so much.  It sounds like you need the heavy guns to get you to a more tolerable disease state.

    Mine came back when I went off the pred, but then with steroid mouthwash, it was tolerable -- two ulcers in the lower back of my molars and rough/scarred inide of the cheeks, but tolerable enough to eat.

    I have began clean eating, with salmon, sweet potatoes, broccoli/greens, eggs, very little refined foods or white starches (very little starch except for maybe sweet potatoes or lima beans--both good low glycemic foods), antioxidant juice mixtures (pomegranite, tart cherry, grape and cranberry--not a tart tasting mixture at all).  This has also stopped my severe arthritis pain. Also, make sure you are taking vitamin D supps.  After years of deficiency, I just barely got mine up to the bottom of normal at my last blood test, so I have upped my dose to between 6 and 9K IUs a day. 

    Do not drink, smoke, or use unprescribed drugs.  If you have iron overload/hemachromatosis, get phlebotomized (red cross/other instituions will do this for free usualIy).  Avoid all plastic food containers.  Avoid all areas where there are pesticides or spraying of these types of chemicals.

    Have you had liver tests or celiac disease tests?  These conditions often cause OLP.

    Hang in there.

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  • Posted

    Hi Jason, I was just wondering you how are getting on..
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    • Posted

      Doing ok- the last flare has calmed down.  used a few dabs of steroid and started oil pulling with coconut oil. also been drinking bone broth and am considering a broth fast for 3 days....i read this can regenerate your immune system and put autoimmune conditions into remission. how are you?
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    • Posted

      Hi, Good idea re the bone broth, another good one would be to consider making Kefir, water kefir, some people swear by it, and it has been known to help people go into remission with Irritable Bowel Disease, its worth looking at for sure, look on Youtube for how to make it.  I don't believe in fasting, I think it can do more harm than good, but having a LOT of bone broth is a great idea.  I'm fine, I recently discovered sulfite free wine, which has cheered me up immensely.
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