Behçet's Disease and remission

[Sunset]

Among the Behçet's patients, who show signs of major and minor disease, is there a long-term remission?

[LisaNZ]

I’ve been wondering that too. I had my first and only significant outbreak in December 2019. I was hospitalised for extremely (!) severe genital ulcers. They diagnosed me with behcets while I was there, treated me with steroids and I’ve only had minor symptoms since then (touch wood).

I’ve also got fibromyalgia and a soft tissue disorder too so some of those symptoms might also be associated with behcets instead (eg tiredness, brain fog etc). I also occasionally get mouth, throat and scalp ulcers but I think the colchicine helps with those. I also developed severe asthma but not sure if thats connected to the behcets.

Not sure if that helps much. I mainly just responded so I could follow this post as I’m interested too

[Sunset in reply to LisaNZ]

Behçet's disease is an autoimmune disease, and it is accepted that the risk of developing BD is high in people with HLA-B5 and its subgroup HLA-B51 genetic structure. Infections in people with a genetic predisposition and a family history of Behçet's Disease may be the initiating factor.

[012703060610]

I seemed to have developed the oral and vaginal sores in my 20s. I managed the oral sores with my dentist using a certain mouth rinse. He suspected Behcet's but I of course didn't believe I could have it. Plus I was young and of course felt I couldn't have such an extreme disease. I am 44 now and the disease has progressed into relatively severe. However, I have five different autoimmune conditions and so many symptoms overlap. I try to keep the oral sores as my main source of a Behcet's flare. I take methotrexate to treat all of the autoimmune diseases, but it is harsh on the body as it's just a lower dose of a cancer drug. I do have a genetic predisposition to a ton of infections but also grew up around harsh chemicals too in my hometown. I have heard of many going into remission, so I do think it is possible. Colchicine didn't work for my sores for some reason. I use dexamethasone oral solution and with a vaginal sore, I actually crush prednisone up and put it on directly. It works! I would do it in my mouth if it didn't taste so bad. My goal though is to stay off of prednisone, but I keep having to do short courses to deal with random flares.