My daughter has terribles ulcers in her mouth ... - Behçet's UK
My daughter has terribles ulcers in her mouth recently been diagnosed with Behchet's syndrome any advice most welcome
Hello,
Sorry to hear about your daughter. You will find lots of support and hints and tips here, for sufferers and their families and friends - anyone whose life is affected by BD.
There are many discussions about ulcers on this forum - if you type 'ulcers' or 'mouth ulcers' into the top right hand corner search box you will find them. Here is an example:
behcetsuk.healthunlocked.co...
The Society has a factsheet about them that you might find useful
Thank you I hope so it's been 3 years trying to get a diagnosis and now that we have learning to live with it
I think there are several threads here by people who are newly diagnosed or new to the forums and you might find the discussions there useful too. Do have a good look round, we are a friendly lot and you might find answers to questions you have and hints and tips and coping and managing strategies that will be useful to you.
Hello there i have had BD for a very long time and these dam ulcers are so awful the pain from them is terrible. I have tried everything possible and for me nothing works even medication from the hospital. when i have flares i try to keep my mouth as cool as possible e.g ice cream and very cold drinks and i hope that they go as quick as they came so sorry i can not give any more advice.
I have BD, was diagnosed early last year and for 2 years previous I had terrible mouth ulcers and also ulcers in my throat I struggled to eat and drink, when I was diagnosed I was put on a low dose of colchicine and since then have had about 3 tiny ulcers so it made a huge difference. I hope your daughter can find something to help her too! Xx
It's encouraging to see that so many people are getting diagnosed relatively quickly nowadays. Some of us olduns waited 30 years or more for our diagnosis.
With the new Centres of Excellence in the UK, the Society website, this forum and research, there is so much going on now - we are lucky so much progress has been made.
Hi I've had BD for more than 25 years and obviously we must listen to the advice from our consultants here are a couple of tips that see me through a flare up.
1) chenille inhaler. Best results if used as soon as flare up starts. Pump several times into mouth, hold for a 30 seconds and repeat upto 5 times daily reducing as you recover.
2) I find the only liquid I can mange is coca cola.
3) Drinking through a straw helps
4) REST REST REST
5) finally take photos so that next time you see consultant you can show. This is a good idea for any ulcers or lesions on other parts of the body.
Your daughter did well to get a diagnose so quickly........it took me 12 years!!! I do wish her well, and remember to rest as much as possible during any attack.
Hope this helps
Billi
Hello, So sorry to hear about your daughter. This is not a fun experience.
I have been suffering with mouth ulcers for about six years now and was just diagnosed in October. Read as much as you can about pro and anti inflammatory foods. keep a food journal and record her symptoms so you can see what things trigger the ulcers. I gave up wheat, sugar, dairy, corn, red meat and the birth control pill (I don't know how old your daughter is so I'm not sure the pill suggestion would be applicable) in order to control inflammation in the body. Sugar is the WORST thing for anyone suffering auto-immune disorders. For everyone actually, but especially us with compromised immunity.
I have a prescription for a cream call "Oracort" which is applied right to the sores and works wonders. If you catch them when they are small you can avoid them getting big and painful.
Hope this helps. The ulcers are seriously THE worst part for me. I HATE them and am so happy whenever I get a break and can eat without pain. They are awful and I sympathize with your daughter 
Take care,
Kat
As you can probably deduce from the answers you already have, mouth ulcers are the most common and also most painful/inconvenient symptom of BD. I have steroid lozenges and also find ice/ice cream/ice lollies a good way (and not unpleasant) to calm things down and numb the pain.
hi coll i am sorry to hear diagnoses for mouth ulcer i have been taking last 25 years corlan pelet hydrocortisone 2.5 mg but most importand is your angel is now is so scare she need very strong suport when you have behcet`s you dont know what to expect next she need good suport and need to speak to help line of Society good luck all the best
I was diagnosed as a child, and the majority of my illness revolves around mouth ulcers. Lidocaine (Xylocaine) Viscous applied with a qtip as frequently as needed was always the best for me when I was young. I still use it as an adult, but now when I have mouth ulcer flares I also take a steriod dose pack and some lower dose vicodan or percocet.
