Behcet's Syndrome Society
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hi my name cindy

hi my name is Cindy and I've been diagnosed with bechets. I'm in constant pain all the time I have ulcers on my tongueand in my nose I've been getting Remicade treatment they help the smaller doses but I have one big one what doesn't go away and it hurts so bad you can't help but bite your tongue and that makes it even worse I just don't know what to do anymore.any suggestions please help I go to the doctor every other week for treatment constant pain just don't know what to do anymore.

1 Reply


Sorry to hear of your pain. It is so aweful to be constantly in pain like that.

I use what the london COE call triple mouthwash. It is made from a steroid tablet which you dissolve along with a small amount of nystatin and a doyxciline tablet. You are supposed to use it 4 times a day but I uusually only manage 2 or 3. It does work in my experience, although I unfortunately get ulcers in my throat and towards my eustachian tube which is hard to reach even when gargling. If I don't use it I soon can tell the difference. It does stain your teeth and also can make your teeth seem sensitive so I was given a toothpaste on prescription as well!

If you have one bad ulcer you might find that sparaying it with a steroid inhaler (like the one for asthma) could help especially if it is in an easy to reach spot.

Kind regards,



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