Behcet's Syndrome Society
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Remission ?!

Hi Everyone (Only second time posting so bare with me)

I was diagnosed about 5 years ago (im 26 now) suffered with a number of symptoms... leg ulcers being the worse... i look like ive fought off a shark attack on my legs (Yay for explaining that to girls on a one night stand) ... almost all the issues i had were for the first two years and the last 30 months or so have suffered very little my throat and mouth being the old real hotspot i get tonsillitis style conditions maybe once every 5 weeks or so.

My question is what sort have time have people gone without any symptoms whatsoever ? is it conceivable this is the extent of what i will get for the rest of my life

Appreciate any responses !


Dave J

6 Replies

Hi there is no answer I'm afraid I suffered very, very badly from the onset for about 18 years but back then nobody knew what was wrong with me and it took over 12to get a diagnosis. Also very few health care doctors etc knew anything about the disease and it's many symptoms or possible medications. It is much better nowadays. Having said this we all also suffer different symptoms at different times at varying degrees, I have suffered with BD for over 30 years and I started to get remissions longer for the last 8 years maybe. Ulcers which were constant for 10 years are now infrequent and for shorter periods and less intensity. Other symptoms are almost always present at times. I've never had full remission but it is for longer periods and I am able to deal with it. We all suffer in ways but it does I think get easier. This is probably not what you wanted to hear, just listen to your body, rest when you need to, don't overdo things, try not to worry, be strong and positive and you can lead a near normal life.


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Cheers for the reply ! I guess you read the real scare stories and they stick in your mind ! here is to hoping ive had the worst and that the understanding o it improves as i get older so treatment can be improved

Whatever is in that infliximab treatment worked amazingly ! so shout out to the scientists responsible for that ha ha

Will have a drink on you this weekend Bill !


You're welcome. Don't forget that drink!!


I've lived with this for about 4 years now. I use to get 4-6 flairs a year, I'm medicated now so its a little different. I'm 29 and am very active. I have maybe 1-2 flairs a year. I use to get 20 mouth ulcers at a time, I haven't had any in nearly a year. I still have lite issues time to time but it seems to have lightened up a bit. For me the #1 thing is to control my stress and either remove it from my life or manage it better, it sounds lame to some, but i meditate regularly to keep me focused and calm. I've noticed flair ups and stress go hand in hand for me.

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Keep a food diary.


my son has never had a remission. this throat ulcers and mouth ulcers get infected. also his salivary glands swell up (what the heck) and if he eats like sour skittles it will get the saliva going but he has mouth ulcers so sour doesnt seem like a good idea. it is better for him to eat the sour skittles than go have (another) operation of any kind. it is frustrating and unbearable for me and God only knows what he is thinking. he is in good spirits but zero quality of life


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