Behcet's Syndrome Society

Does anyone have lip lesions/ulcers?

I definitely have systemic vasculitis, although my rheumatologists debate each other about whether it is BD, because I've never been biopsied. At any rate the treatment would be the same as it is for other syndromes.

I've had a bloody open lump in the middle of my lower lip...like a split lip, except I haven't had any trauma to the lip. It is painful all the time, especially when I move my mouth (which is most of the time) and hasn't seemed to improve. I recently began putting antibiotic ointment on it, to soften it and protect it as much as possible. When I look past the bloody part I see an opening about 3mm square. I asked my rheum if it was possible BD, but it is a week since I've heard back and I'm wondering what to do.

I have an appointment with my dentist next week; possibly she can shed some light on it and/or help me.

Has anyone had something similar? What was it? What did you do to cure it? How long did it take to go away? How long do BD ulcers usually last?

Thanks all for your help.

Robin

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Hi, I am Cindy.

Can the docs give you oral prednisone pills?

Some people use asthma inhalers with cortisone in it.

They place it over oral and/or genital ulcers, and give it ,1-2 puffs, 2-4 times a day.

There IS a connection between NICOTINE AND BEHCETS. SOME PEOPLE USE NICOTINE PATCHES ON THEIR ARM, NOT ON LESIONS. Or NICOTINE GUM.

I SAW oral SURGEONS, dermatologist, AND ALL THE OTHER "OLIGISTS". All kinds of prescription mouth washes, nothing worked!

I HAD QUITE SMOKING AND HAD 5-6 oral ULCERS THE SIZE OF AMERICAN QUARTERS!

2% LIDOCAINE GEL (SCRIPT REQUIRED) HELPED SOME. HELPED ME BE ABLE TO EAT AND SWALLOW.

I USE CHEWING TOBACCO, I GOT HIVES UNDER THE PATCH WHEN I TRIED IT.

I had not been diagnosed with Neuro BECHET'S, yet.

I FINALLY GOT 3 VAGINAL LESIONS, ONE AT A TIME. LAST ONE WAS BIOPSIED (OH, OWW!! 2 PUNCH BIOPSIES OUT OF A NICKEL SIZED LESION!) BY OB/GYN AND HE NAMED IT!

*** I DO NOT RECOMMEND ANYONE USE TOBACCO OR NICOTINE PRODUCTS. THAT IS UP TO YOU AND YOUR DOCTOR TO DECIDE. I HAVE NO MEDICAL TRAINING, I AM A PATIENT JUST LIKE YOU. I HAVE DONE A LOT OF RESEARCH AND I KNOW WHAT WORKS FOR ME AND OTHERS.

Dr. Yazici is doing a study on NICOTINE and BECHET'S Ulcers. There is a connection.

GOOD LUCK,

CINDY

CALIFORNIA, USA

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Thanks, CIndy. Yes, I take prednisone and cellcept (mycofenalate). I've never had anything like this lesion, but I'm seeing my dentist in a few days and hope she'll have some insight. My rheum. doesn't know if it's BD or not.

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Hi Robin,

There's an oral steroid paste called Adcortyl which I use on mouth and lip ulcers. It's sticky stuff and you need to persevere with it.

Beau

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Sorry, additionally suggest swirling Doxycycline round the area ×4/daily. Contents of 100ml capsule in water, do not swallow. This came from my dentist, works wonders.

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