Do you have symptoms prior to a flare? - Behçet's UK

Behçet's UK
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Do you have symptoms prior to a flare?


Hey guys!

Do you somehow feel that you’re about to have a flare, before you actually have a flare? How? And what are you feeling?

Also, I’m currently in a lot of pain in my nether regions (sorry for tmi hahaha) and it looks swollen however there are no ulcers. Could this be a symptom prior to genital ulcers or is it more likely something else? I hate that you can never really know with behcets haha. In my town it’s also extremely difficult to get a gynecologist to look at it, it usually takes months, and i kind of need help now.

7 Replies

go to the ER. I waited and ended up closing up my urethra and causing sepsis. No fun at all.

Sounds familiar! Yes I get this before an ulcer break out, I know they are coming and not a lot I can do about it. I take lots of salt baths that seem to help a bit. I also feel very tired, get headaches and generally feel unwell. Hope it's not a bad one.

Yes I experience this too! Unfortunately experiencing it now even. I do self examinations with a mirror or take a pic with my phone but I see nothing but minor swelling. Then I get in my head and immediately start freaking out... anticipating how bad it’s gonna be. I become terrified of moving or sitting up so I won’t aggravate it, thinking maybe nothing will happen this time and the sensation will go away. It’s like a huge emotional and physical snowball effect. I hate it! So, in other words, you’re not alone. Unfortunately I feel that most of my symptoms are experienced and managed alone because the doctors just don’t seem to understand or care, not sure which.

Yes, generally very unwell usually off the back of getting over something else which takes me longer to shift and recover from. Re downstairs, this seems to flare quite quickly, simple bath salts can help soothe and bathing generally, synalar ointment was the only thing that took the redness & angry appearance away. Best wishes

Hi there and happy almost New year! Before I flare, I start to get the chills and bizarre temperature regulation problems. This is coupled with changes in my anxiety and depression management. Followed by throat pain, swelling and hoarseness; more insomnia than usual; appetite loss worse than usual; severe joint, muscle and bone pain; breathing swelling in the vaginal and anal region; increased head and neck pain; eyes get funky and then everything starts really going to crap. I imagine it's different for everyone depending on how the disease impacts us the most.

HI there- for me, i get very tired. I get erythema nodosum dots on my chest, (they look like pimples with no head), and my wrists start to ache. If I ignore all this, ulcers will come orally, (it will start to feel raw/tingly). Ive learned that I can only have downstairs ulcers, if there are upstairs ones.

I think the difference between catching a flare now vs "back then" is that I am aware of my habits and regimen. So if i sleep poorly two days in a row, im more likely to flare. If Ive been running around for a few days with out enough breaks or a nap, Im more likely to flare. If i eat terribly, I will most certainly be more prone to flares.

So i try to keep my lifestyle in the back of my mind like-- yeah.... you over did it or are about to.

I have also had swelling without ulcers and I thought it was a sign that they were coming but the swelling went away so I can’t be sure. It may be different for you though. I often times have the other symptoms without the ulcers. But if I’m fevering for a while I know there’s a higher chance of developing ulcers. I had the worst experience of my life with vaginal ulcers while fevering. Wouldn’t wish that on anyone. Wishing remission for you!

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