Does behcets often go into remission? I have not had oral ulcers for about 5 years now. In fact the only symptom I can think of is knee

[Worriedcc]

Joint pain and stomach produces too much acid. I have never had to take meds other than steroids for the eye and that was 13 years ago.

[mariarich41]

Hi. Just to stop you worrying, my behest doctor says it does . Don't know your age, but I am 44 and I got diagnosed about 10 years ago now with very bad eye problems and mouth and genital ulcers . That was the only time I got the genital ulcers and get the mouth ulcers once in a blue moon, I am so lucky. I am only on mercaptopurine and one prednisalone tablet a day and I am so lucky. When I read some of the posts on here they are like a horror story and I often wonder if I was given the right diagnosis as some of the members really do suffer . My doctor (professor fortune) in London said that quite often as you get older the symptoms start dying down, so I don't know if maybe that's what's happening with you. Or we are just lucky little souls . Hope this helps xx

[bddex in reply to mariarich41]

it does seem like they are confounding behçet's with another disease - to me, the very vascular and neuro symptoms often overlap. i also think they should test for hla-b51 as a standard diagnostic measure - i realise not everyone even with severe behçet's is hla-b51 positive, but there is so little data on this outside of turkey it is difficult to discern how strong the correlation really is (i am hla-b51+; many drs also confound hla-b27 w/a behçet's diagnosis when that allele is correlated with spondylitis … which can also present with uveitis, ulcerations, &c. &c.). i consider my behçet's which has some vascular and neuro- components (a lot of eye problems and a lot of brain problems in the past; now lots of nerve problems) to be "moderately severe;" as you mention, there are so many horror stories and i know so many people who are so sick with this "syndrome" and i have known dozens of young WOMEN who have died from it. i have never met anyone fortunate enough to go into remission (despite what the literature says!) so i am very relieved to find some people who seem to have achieved it here! only the future will tell if there is another disease being currently diagnosed as behçet's, but for now i will think of you both and remember there is hope!! thank you for sharing your stories!!

[shorty250470]

Hi, I'm not sure after reading some of the post on here but I have been symptom free and medication free for 15 years and like the other person I am 44, was diagnosed at 16 and only ever took thalidomide, after my second child in 1998 I have been perfectly well, I too consider myself very lucky, so if you get alot of replies with similar stories then i suppose the answer surely must be yes, fingers crossed ! Xx

[magician]

Hello, Luck Souls!

Great to hear that BD does not vanquish all of us to smithereens. I would be very interested to hear from you if you made any major lifestyle changes that might have minimised your BD symptoms

[billi]

Hi and yes I was lucky enough to have 5 years full remission thanks to Colchicne and then another 3 years of mild symptoms after stopping (due to small stomach bleed). Sadly just now at age 63 it seems to becoming back strong, not so much the ulcers, more the aches and pains and terrible lethargy. Still life goes on and we must stay strong and keep positive or the disease has won.....and I don't like losing...lol

Hugs to all

Billi

[nettie545]

Hi I have been in remission from the mouth and genital ulcers for the best part of 20 years now. I've had two stomach ulcer operations in that time. I do have joint pain and digestive problems and pain from the nerve damage to my spine. Got Raynauds as well and Arthritis. We are very blessed to have escaped for some years. I pray that everyone would go into remission! Please Lord! Amen

[happyhacker56]

Hi yes , i think that as you get older it can often go into remission but then if stressed etc it can rear its ugly head again.I have had BS for 20 odd years and thanks to Colchicine and pain prevention am alot better than i was a when first diagnosed!xx

[Dan_NY]

According to one of the Rheumatologists I saw who is apparently the leading Behcets doc in the US, after 2 years on athithioprene, roughly 60-70 % of patients go into remission. I am waiting for 2 years to stop these meds and hope to be symptom free. My case is a little different though from many on here, as I would get mild to moderate aches pains and other symptoms for many many years. Not fun, but I could handle that until I got blood clots that I could not handle. Also started getting testuclar pain and then the POUNDING headaches came. Looking back, I see a steady increase in symptoms for about 5 years now. Culminated worst flare at age 44 and Behcets kicked into high gear. Meds for 3 or so months seem to do little except make me dizzy, lethargic, among other things. My case I am getting worse with age.

[Dezie in reply to Dan_NY]

Hi Dan_NY

Hope you don't mind me asking you who you went to se? I saw a top dude in New York that said I have a chance of remission by taking azathioprine and TNF enbrel as a combo. My symptoms have gone wilded over the last 2 years

Dezie

[Dan_NY in reply to Dezie]

I saw dr yazicki or however its spelled.

[Winning]

Sorry Dan_NY for your worsening symptoms. I just wanted to add that my Endo put me on Hectorol a form of vitamin D (25hydroxyD) in an attempt to go after the headaches. It worked for the headaches and my mouth sores all but stopped. It's a serious medication as all of them and requires the doctor to be attentive to your particular symptoms, but it worked for me. My symptoms worsened over the years until two years ago when I had an abdominal tumor that had to be removed. That's when I went to this special Endocrinologist. Thank God for him. We are all different and yet the same. Prayers and Love coming your way.