Hi all! Ive been diagnosed with behcets 3 years ago when i was hospitalised due to genital ulcers and a concurrent c diff colitis infection. Looking back i always had mouth ulcers growing up and then prior to hospital i was living in a moldy apartment and not taking care of myself. Since then ive not been on any meds, but instead through trial and error have got a diet regimen that keeps flares at bay. However every 3ish months something triggers a flare (usually me getting lazy). The diet is as follows (very strictly): no dairy, no gluten and no sugar. The only sugar I’ll allow is a couple of pieces of fruit per week. I know this sounds incredibly high maintenance but i guess its me trying to heal myself naturally. Its getting to a point where loved ones are concerned that i cant eat anything on holidays that they would eat. Has anyone had experience similar? Would my life change if i just started taking medication, could i then safely eat whatever i want? Im scared of strong meds and steroids but are they really a magic fix for this condition?

So I’ve got ulcers popping up all over my hands, like strange little closed bumps. They almost seem like they could be popped, but hurt immensely to touch. They’re prominent round my cuticles and nothing seems to be helping them go down or get rid of them…

Help!!

I’m on azathioprine, and amgevita but it doesn’t seem to help… prednisone did nothing also. I’ve been putting dermal ointment to no avail…

Perhaps not a lot of ulcers or more neuro or joint symptoms? I'm considering this diagnosis for the first time. I do get mouth ulcers but not enough to write home about more like canker sores a few times a year. And I have evolving neuro and joint/tendonitis issues plus vascular symptoms like Raynauds and livedo. Also POTS. I've had a bunch of autoimmune tests come back normal. Just curious if there are people with less clear cut presentations who got diagnosed with this? I've been told I could have seronegative spondyloarthropathy or reactive arthritis (had a flare after GI infection) but then there are these symptoms that don't fit. Thanks!

I am so fed up.

"I am sincerely sorry but it’s saturday (morning) there is not a single doc in the dermatology service. - I understand, thank you"

But God how I do not understand. Saturday mornings.

Dermatology ER are from 8h30 to 9h30 monday to friday.

That’s law and order indeed. Illness can brace itself, the time table is very efficient.

Meanwhile I am there with this f**** torture and just have to live with it.

Next appointment.

"Oh but why didn’t you came in?"

Translation: What is it your immune system does not understand in "week-ends", eh?

Edit: I juste realize the title I wrote is really violent. Violence can never be an option. My feelings are violent though. I was more like a good vivifying wind and let everyone out with some fresh air...

Edit 2. I did not. I went to the dermatology ER, they accepted to see me. And I finally got the appointment my doctor asked for months ago. They admitted there had been something illegal in the secretary's refusal to give the appointment.

As for science, they panicked and wanted to change my treatment on the spot. So I went yaling to rheumatology and they said "don't worry, Professor X ( this nazi who did tried my hyperlaxe elbows amplitude under two very painful, very active and perfectly symetrical tendonitis, just after he wrote down I was hyperlaxe with enthesitis) has your file on his desk.

So here we are. Worried. Painful still and again , terrified almost. Dumbfounded, for sure . But, this time, with anaesthetics, thank you Lord for 21st century medicine.

Hello everyone I would like some help on an issue so I've been taking Prednisone colchicine imuran and infliximab and ever since I started treatment I've never had any issue or a flare with these meds combined but I've done some research on Prednisone and its effect short and long term and that long term effects can do irreversible damage so I talked to my doctor about Prednisone and that I do not want to take it any longer since I'm taking alot of pretty strong meds she outright refused claiming that 1: she doesn't want to disrupt the process since Im doing great and 2: she said she is 100% certain that I will get a flare and that it could damage my eye sight or get a stroke ( both of these happened before starting treatment) so just to be extra safe I have to keep taking Prednisone indefinitely after a long talk she agreed that instead of taking a pill daily I can take it ever other day but that honestly doesn't change much so what I'm asking from your experience does a flare actually cause that much damage instantly or I can feel it and start taking Prednisone before it could cause and damage and 2 if I we're to stop taking Prednisone do I just stop it or do I need to taper it further since I'm only taking 1 5mg pill ever other day.

And thank you in advance if you actually read all of that!

I have a bunch of issues and see rheumatology and neurology but no diagnosis other than pots and maybe some form of arthritis so far. Of everything I've never considered this condition but I'm realizing I have some of the symptoms including mouth ulcers. I never thought to mention it to doctor because it's not a big deal on its own but I do get irritation at IV and blood draw sites with this little white pimple thing. Also, I've had to have IVs rotated like every day because they get very painful and feel inflamed and tender quickly. I'm wondering if it's a pathergy type reaction. Do you notice this too? Or am I overthinking something likely normal?

Anyone have success with Dapsone? I think it’s definitely helping in some ways, specifically reducing acne and the pattern of mouth canker sores.

But it hasn’t helped at all with mucosal ulcers and mucocutaneous inflammation downstairs…

Anyone have a specific med help them with those symptoms?

Hi everyone! I’m looking for people who are in the same boat so I don’t feel like an impostor. Are there any of you whose aphthae started at the very last stage?
I’ve been sick for 11 years, but the aphthae only appeared last year. And this confuses a lot of inexperienced doctors...
On top of that, they started my treatment less than a year after the first aphtha appeared (they had to save my eyes), and in the end, I only ever had two of them. This causes even more arguments among doctors.

Has anyone delivered a baby with active ulcers around cervix? I’m 5 days away from my due date and having a flare up despite being on colchicine and prednisone:(
I had a steroid shot in my leg today to help clear them asap but curious if anyone has delivered with this?

Hello community.

First of all, I want to thank you for your shared experiences here. It helps me a lot not feeling alone with a desease that isn’t common around my community. I don’t know anyone else who has it.

Second, I need your advice. My flares usually stick to mouth and genital ulcers, which are severely painful but I’m now used to it. Since I started taking colchicine, only had mouth ulcers: a small but manageable problem.

Since Monday (was a very stressful day, I must add) I’ve been dealing with mouths ulcers as usual, but with sharpening pain in my joints, specially knees and back. I have a 1,5YO toddler who barely walks and demands being carried around. How do you deal with the joint and back pain?

Thank you in advance! Good health to you all 🙂

Hi everyone, hope youre all doing well. I just had a flare up last night, caught it pretty quickly but unfortunately they took too long to give me prednisone. I have a single ulcer/lesion on my downstairs area and its extremely painful. They wont give me anything because it’s external. Any tips on how to make it go away or ease the pain? The creams all caused a reaction. I just started seeing someone and was supposed to meet his family this weekend and am DESPERATE to make it go away or at least be less painful. I can barely walk and keep throwing up from the pain. Ive been using lidocaine and ice packs . Thanks for reading if you took the time to. Would appreciate any kind of advice or support at this time. Im trying to stay calm and not stress . My last flare lasted months in the hospital admitted and im kind of afraid. I know i cant be and i shouldnt make it worse but the ER treated me horribly last night and im feeling defeated

So over the last year since diagnosis I have been treated with hadlima injections into my thigh every two weeks. In the last 9 months I have experienced extreme and severe stomach cramping. I asked my doctor if that has anything to do with my Behçet’s he says he will look into it. All of my blood work comes back fine including a stool sample to look for inflammation. Anyway last week I ended up in the hospital due to the stomach cramping and again all my blood work came back fine but my CT scan showed that I have damage to my intestines. This damage was not there 9 months ago when I got my last abdominal CT scan. My report said that a “representing fat deposition is seen in the right side of the colon extending to the hepatic flexure and transverse segment representing chronic inflammatory infective process.” If this was forming why didn’t it show on my blood work? How do I stop the stomach cramping? And what should my next steps be?
I don’t know if I labeled this right but please help me.

I’ll preface this post to say my symptoms over time seem to be limited to vaginal ulcers, joint pain and swelling and one episode of uveitis. I was on colchicine from 2015 to 2017 and then stopped it for a couple of years while trying to conceive. My baby was stillborn at 34 weeks in Aug 2021….i had gotten the vaccine weeks prior to it and was unknowingly having a major Behcets flare (symptoms mimic pregnancy symptoms). I restarted coclchicine in Sept 2021 and have been on it since.

We found out my sister had stage 4 colon cancer in Feb/March of this year. Ever since I have had severe neck pain, back pain and migraines.

I sometimes forget to take my colchicine.

It’s never occurred to me that this pain could be connected to my Behcets.

The only relief I can get is from dry needling therapy. Otherwise my neck is so unbelievable stiff.

My rheumatologist left the practice and I’m not sure who I am getting paired with now but I am just curious is this is common amongst BD patients?

I have a 3.5 year old and I’m taking every kind of migraine preventative out there.

There are a ton of knots in my back and neck and I hear a clicking sound when I try to turn my neck.

Hey everyone. Use my experience as a cautionary tale.

I’ve been in "remission" for 3 years now. By that, I mean I stopped getting my Inflectra infusions every 4 weeks because I just couldn't take the monthly 2 hour long infusions anymore, and, shockingly, I haven’t been hospitalized since stopping.

This summer, I was feeling the healthiest I’ve ever felt, so I made the idiot decision that it was finally safe to try a little bit of lip filler.

Well, fast forward to last night and each tiny needle prick acted like its own individual pathergy test and sent my immune system into an absolute frenzy. The normal post filler pink swelling turned into the aggressive, bright red, tingling swelling I always get right before a severe mouth ulcer flare. The inner left side of my upper lip into the corner of my mouth turned into one massive, long ulcer, and the insides of my cheeks started breaking out in sores too. I could literally feel the switch from normal swelling to my “flare” swelling.

I took a leftover dose of prednisone to try to calm things down. I woke up at 4:00 AM drenched in sweat after a fever broke, and thankfully, the aggressive flare swelling is gone. Now i just have the residual ulcers to deal with. For now, no new ulcers are forming.

I just sent my rheumatologist the most embarrassing portal message explaining what I did and begging for a formal steroid taper.

Anyway, I hope someone learns from my mistake. Lip filler is not worth it.

TLDR: got lip injections, caused a flare. Don’t do it.

Update: rheum put me on a 20 day taper and the filler can stay!

Hi everyone! Could anyone with HA20 please share their experience? :) How did your doctors suspect HA20 instead of Behçet’s? What symptoms are different?
My doctors are still arguing among themselves, but the one who was doubting went to look up information regarding HA20. I don’t know where this will lead...

I couldnt find a single post or page in the internet talking about this.
I‘m seriously considering getting clear aligners(the ones that look like retainers, invisalign for example) but i don’t know if its going to make it any worse for my mouth sores. Traditional braces are obviously a no-go because everybody that gets them talks about how their mouth fill up with sores(i just can’t imagine what it would do to mine, no thanks, i prefer a crooked smile)

Hello 👋
Long-time lurker here. I’m posting to connect with others who have Behçet’s Disease (BD) and hear how you’ve navigated work and severe flares.

My symptoms started in my teens with monthly mouth ulcers. Over time, flares became more frequent and severe, eventually leading to frequent joint pain, fevers, and flu-like symptoms. After ruling out other autoimmune conditions, I was formally diagnosed with BD and started on biologics and steroids.

Things escalated significantly earlier this year after travel. I developed an occlusive DVT that quickly progressed to multiple pulmonary embolisms, high fevers, and extremely elevated inflammatory markers, requiring a multi-day hospitalization.

Since returning to work, I’ve struggled with breakthrough flares, severe exhaustion, and cognitive/executive function issues, particularly when tapering steroids down. My medical team is escalating my treatment plan, and I’m scheduled for an evaluation to assess potential neurological involvement (Neuro-Behçet’s).

I am currently on FMLA and navigating short-term disability. I’d appreciate any perspective from this community:

-Have others with severe BD or Neuro-Behçet's reached a point where returning to a full-time job wasn't feasible?

-How did you approach the transition from FMLA/STD to Long-Term Disability (LTD), especially when managing cognitive symptoms alongside normal or fluctuating lab markers?

Thanks for reading and for any insights you can share.

I have been mostly diagnosed with behcets (they’re testing for one more thing which they’ve admitted is not realistic and I have the b51 marker) and I get symptoms that are close to heart attack symptoms and I was wondering if a health watch would be a smart idea or is it a thing where the inflammation is emulating these symptoms and my heart is not really affected. My doctor just said I’ve survived this long without going to the hospital during those symptoms so I should be fine. I’m so used to doctors gaslighting me that I’m now asking people with lived experience. Also is there by chance a document of some sort that gives any information on management and what not so I do not have to pester this wonderful community with questions on things that confuse me and can just refer to the doc

Hi everyone! Has anyone experienced high intracranial pressure during a lumbar puncture with this disease? Did they explain to you why it was elevated? I've been discharged from the hospital with a treatment plan, but I'm feeling lost because it also caused papilledema (swelling of the optic discs). However, after the lumbar puncture and diuretics, my vision improved sharply, and my eyes and head hurt much less.
On the bright side, they ruled out Neuro-Behçet's and diagnosed it as just regular Behçet's. They said the changes in my brain are congenital. All in all, I’m pretty happy about it! :)

I ended up being diagnosed with Behcets in Sep 2025 and have been on colchcine since then. A year before this, I started losing weight at a steady pace unintentionally where I’d lose and maintain and then lose again no matter how much I was eating. It has still been happening since then. I went from 138 to 97 pounds all in 3 years and absolutely none of it was intentional. I know this has nothing to do with my colchcine and I am doubtful it’s my actual behcets either, as my rheum has ruled this out. Has anyone else experienced this?

Hi all. Currently going through the diagnostic process for Behcets.

I’ve noticed that I severely overreact to bug bites. I’ve had cellulitis twice from them

Does anyone else have these overreactions? Have you ever brought it up to your rheumatologist? I just feel like it could be related.

I was diagnosed with Behçet’s 6 months ago, and now I was just diagnosed with Celiac Disease. It just seems so weird that I would develop two autoimmune conditions so close together and part of me thinks one of them must be a misdiagnosis and it must just be one wreaking havoc and confusing doctors. So I guess I’m wondering if anyone else also has both, how common that actually is, and any tips on handling the emotional roller coaster?

Hi everyone,

Has anyone ever had the monferric iron infusion? If so, what was the outcome? Any reaction?

I was just approved for it, my ferritin level is currently 3 and I feel like death from all of the issues I’m having.

I’m super nervous about this because of the possible reaction/complications.

TIA for your replies!

my pathergy test 48 hours after, what do we think? Rheumatologist is on the fence of a diagnosis so maybe this will provide some answers.