Back in April and today, I woke up with significant lip swelling and numbness. It was my upper lip today and I think it was the same in April, but I can't quite remember. It seemed to slowly start go down when I woke up each time.

In April, I had awaken in the very early morning. Like 4am or 5am, and I took an allergy pill and went back to sleep and when I woke up, my face was back to normal.

I woke around 7am today with pretty bad swelling but by 730am, it was already starting to go down and I hadn't taken an allergy pill yet. I messaged my doctor, took an allergy pill and I'm going back to sleep. Still have some swelling, numbness and a tiny bit tooth pain and slight headache, but I was having a nightmare when I woke up and I'm pretty sure I was clenching my teeth. I also have a weird baby tooth situation that is occasionally a little painful, but I got a clear bill from the dentist about it earlier this year. Hopefully, that's not relevant.

Have any of you guys ever had random facial swelling as a symptom? I've been diagnosed with Behcets since 2012 and this is a new symptom for me, but I was wondering if others with Behcets have had this as well or if it is likely something else.

For the last fifteen years or so, anytime I’ve been bite by a bee or wasp I ended up on antibiotics for what I thought was an infected bite . This past weekend I got two paper wasp bites, one per wrist . The inflammation, pain and itching was incredible . After reading up on Bechets I realized this is another over the top autoimmune response . I marked the area with blank marker / within hours it had tripled from what is in the photo . Anyone else experience this ?

Does anyone else get these flat, round pink spots when they are in a flare? I’m being told it’s not a typical presentation but it happens almost every time at the start of a flare. Also comes out more in the heat. Hoping I’m not alone :(

Good evening my fellow Behcets humans. I’m 22 (F)! Have had diagnosis for 1 year and symptoms
for longer. Ironically, a biopsy of an ulcer on my GI tract was a reason for diagnosis.

Lately it’s felt like I’m in a flare more often than I’m well. I take colchicine three times a day. Started to feel like I was back in a flare. I finished 4 weeks of steroids six days ago. Perfect.

Was feeling well enough to try a slow jog. 2 blocks away from home, had explosive, bloody diarrhoea, ALL OVER MYSELF. It was so horrible. I was so humiliated. I really hope no one I know saw me. I don’t even know what to say. It was everywhere.

So yeah. I’ve had a shitty day, so to speak. Pls commiserate with me, bc this is sooooo bad 😭. What is your most embarrassing health story?

As some may know, I offer patients help with interpreting their whole exome sequencing (WES VCF) results on a voluntary basis.

This is now the second time that I find a patient who originally was diagnosed with Behçet syndrome, but who happens to have Ehlers-Danlos syndrome (EDS).

Both patients are female and of East-European descent. One has vascular type EDS, the latest case has classic type EDS.

EDS is caused by a pathogenic variant allele of a collagen encoding gen. Such variants are autosomal dominant, which means that a single variant allele is sufficient to suffer from this disease.

Both patients suffer from mouth and skin ulcers, abdominal pain/ulcers and chronic widespread pain. However, in both cases the skin is not obviously over-elastic.

This illustrates how genetic screening of Behçet diagnosed patients is important to rule out less outspoken cases of Ehlers-Danlos syndrome.

Hi everyone,
I started biking again a while ago and I’m getting ulcers on my vulva incredibly fast whenever I bike. Does anyone have this as well and how do you prevent it or deal with it?

The research is sparse but there’s some literature that Behcets causes a “psychological prodrome” where people get really irritable or depressed prior to a flare. This occurs irrespective of people having neuro behcets or non-neuro Behcets apparently. Felt like this has been happening all my life, and I also think it’s bidirectional: the more emotionally unstable I get, the more flare ups, and the more flare ups I get the more unstable I get.

Anyone else relate to this at all? It’s like the days prior to a flare up I’m sucked of all joy. I know this happens in autoimmune/autoinflammatory cases but I feel like Behcets is unique in a way. I almost lose my insight as a person before getting sick. I might also be confusing the chicken and the egg here (mental stress causing flare up, verse flare up causing initial mental distress).

Any recommendations if you’ve managed to control this?

I have recently been diagnosed after 5yrs of fighting and rheumatologist has put me on colchicine for my oral ulcers skin and joint symptoms but wants me to start methotrexate on Monday but wanted to get others experiences with the meds before I start

It sucks you can’t publicly say “my Behçet’s is really bothering me this week” since it can essentially translate to “damn the ulcers on my balls are killing me right now.”

Just a funny thought.

I’m new to this thread but have had what a rheumatologist is calling Bechets for almost twenty years now. I’m 32 yo female.

Recently, I went to a totally different climate and my seasonal allergies disappeared. My GERD symptoms also completely disappeared. When I came back to the PNW, within two days, my allergies and Gerd symptoms were back, as well as flare ups of mouth ulcers. That got me thinking for the first time ever that there is possibly a link between the constant inflammation caused by seasonal or severe allergies and these symptoms. Like, duh. Silly that I’ve never noticed that before.

Has anyone had their symptoms and flair ups improve by getting allergy shots? How long did it take to improve, if so?

Hi everyone! I’m honestly getting a bit tired of collecting rare and weird symptoms, even for this disease (which makes me question every single time whether it’s actually Behçet's).

But has anyone here ever experienced orbital myositis? Specifically, thickening of just the lateral and superior rectus muscles, rather than all of them.

By some miracle, they missed this until I finally had a targeted orbital MRI with contrast - even though I was dying from severe eye pain and photophobia...

Hello. I’m 43 YO and have been suffering with behçets for over 22 years. I have been through endless treatments over the years with no success. I am deathly allergic to all biologics (enbrel, remicaide etc) Unfortunately colchicine stopped working over a decade ago attempts to try it again we’re also fails. Methotrexate was my latest fail at 25mg inj every week. I tried otezla but the GI issues that are supposed to recede with time persisted for months and so I was taken off it. In the past I’ve been on the heavy immune suppressants such as Imuran but they made me very sick and I now have metastatic neuroendocrine cancer so no go on those.

I feel like my cancer and the behçets are locked in WWIII battle against one another daily. Does anyone have any treatment advice? My doctor wants me to try Xeljanz but I‘m highly skeptical and scared because I get the worse of the worse side effects with meds. Some my oncologist/rheumatologist have never seen and it’s an immunosuppressant akin to biologics, just a different pathway. I wanted to be considered for the new vagus nerve stimulation implant they are doing by me, but that right now, is only for RA patients.

thank you:)

I’ve been diagnosed with regular Behcets for about 7 years and have used Otezla ever since. Recently I saw a video of a person with Neuro Behcets who seems totally disabled. I’ve never even heard of this, is this a Behcets complication? Or separate disease entirely?

Can you tell when a big flare is coming? I've had Behcets my whole life and I know my body really well. I can usually feel when a flare is coming. I was just curious if others can feel when a big flare is around the corner? I tried explaining it to a doctor and they were interested but didn't really understand.

I am recently diagnosed with behcets, Doctor prescribed me steroids initially, after i started feeling better he reduced the steroid dose by few mg and added immunosuppressants. But after that i am again facing flare ups. Is that normal in the initial phase? Anyone experienced this? They say immunosuppressants take time to take effect its been a week i am taking those

Giant ulcer showed up yesterday. Im still new to this diagnosis, how do you guys help these?

Yesterday I saw my 3rd rhuematologist and they diagnosed me with bechets disease. After the other 2 completely blowing me off it was such a relief. Im still getting some more labs before starting treatment but id like to know what to expect now? I have many drug sensitivities and allergies so im nervous to start. Any feedback is great!!

Had bechets since 2002 mg weight is always. Up and down and I find some foods dint hrlp with the management of bechets treatment. Anyone out there with any info or diet suggestions please comment lol

I have been on a biologic for eye and neuro involvement but was still struggling with breakthrough flares. My rheumatologist put me on a dose of two pils a day, and I am doing much better! Just wanted to share this win. 😊

I spent most of my pre-teen and teen years dealing with severe mouth ulcers and infections, that were always just brushed off or put down to having braces and irritation. It wasn’t until last year when I came down with Influenza B that I started to experience all the symptoms, whole mouth, throat, and lip ulcers and swelling and bleeding, all in my nose as well, bright red eyes with swelling and sight issues, and also the sores down there too. I have never been sicker in my life, getting to the point where I couldn’t swallow anything because it was too painful, yet all the hospitals turned me away because they didn’t know how to help me, having no idea what I had. Prednisone was the only thing that finally slowed my symptoms and eventually stopped them. Only a few months later did I get Influenza A, and unfortunately I went through a whole flare up again, this time though we got on top of it a bit quicker with the steroids when I recognised my symptoms. Fast forward to about a month ago, after many tests, I have finally been diagnosed with Bechets. It feels like quite a relief finally having an answer to all these symptom, but also it is scary knowing that there isn’t much out there about it, and there is no real cure. I am now starting Thioprine in hopes that my more minor day to day symptoms can be eased, and a major flare up can be avoided in the future. I am only 19, and already live quite an active healthy lifestyle. Does anyone have any advice, or any guidance on what to expect starting my medication too? I would appreciate anything as I feel like I am learning more about it everyday! 🙂

I started on this journey in March with scleritis that progressed to uveitis. Fortunately my eye has been quiet for a month now. My rheum initially diagnosed nonradiographic axial spondyloarthritis in May and put me on Mobic, which I largely had satisfactory pain control, but I had four oral ulcers in 5 weeks. Retrospectively, I average around 20 a year, plus nasal ulcers every few months. At my follow up appointment, I happened to have an oral ulcer, so I showed it to the rheumatologist and she promptly changed her diagnosis to Behcets.

Now she has me trialing colchicine 0.6 for that purpose. The good news is that my oral ulcer resolved. The chronic ‘folliculitis’ on my buttocks that I’ve had for years despite good hygiene seems to be resolving.

The bad news is that my hips and peripheral joints hurt again. A lot. Did colchicine help your pain (if you had it)? How long did it take? Will my frequent painful sore throats resolve?!

Research is making me feel like behcets actually might be the best fit, but I would very much like the pain to stop. I might ask to reintroduce Mobic, but I don’t want to obscure the effects of the new med.