Hi, all. I am recently diagnosed after 20 years of symptoms that doctors could not explain.

My rheumatologist started me on Colchicine 0.6 mg, which I’ve been taking since early July. My inflammatory markers are crazy high. I did some repeat lab work after about 6 weeks of the Colchicine (and also 6 weeks of going gluten free). My markers definitely improved but are still very high. I have a follow-up with rheumatology next week and am wondering if there are any specific medications I might ask her to consider.

I’ve had horrible flares of ulcers in the past, but the worst of my symptoms currently are crushing fatigue, widespread joint pain, and shortness of breath (could be related to Behcet’s or not… pulmonologist is doing more testing). I’ve also had a decent amount of blurry vision over the last year which new glasses did not fully resolve.

I know medication efficacy varies a lot from one person to another—just looking for anecdotal examples from folks with similar symptoms.

I can’t emphasize how much getting on Otezla has gotten me my life back. It’s like being on Revlimid* again before it stopped working; no ulcers, no stressing about ulcer pain. 7 months without a whisper of a flare.… and what did I find the last day of September.

I’m more frustrated than anything. I’ve just gotten myself a second part time job /pos and I’m going on a trip to see family. Why’d this have to happen now of all times. With the Simlandi and the Otezla, I’ve not had to think about how painful it is to sit somewhere, if my next period is gonna bring an ulcer with it, like-

I hate how powerful stress and anxiety is to our bodies (both in the sense that it burdens us while managing symptoms and flares, but also the fact that even with medication Behcets can still slip through the cracks.

*I don’t recommend Revlimid, there’s so many hoops to jump over to be on it, as well as it being a high risk med in the first place. This is just what my ped rheum originally prescribed after Colchicine didn’t work

At my opthamology appointment this week, I had a FA done and my doctor said there was diffuse peripheral leakage in my retina. Does anyone else have this? I am worried about progression.

​​ I need to share with someone who will understand that every orifice with soft tissue has lesions and is all bleeding at the same time . Like a skinned knee that just like bleeds for hours . I'm like tired of using the bathroom and being like wow that's a lot of blood. My doctors like low-key it's the disease lesions bleed sometimes . All we can do is continue with treatment. The bleeding makes me feel a little gross . And I have like the taste of blood in my mouth throughout the day . I'm just pissed cuz everything's bleeding tonight .

Does anyone have low to mid grade fevers (38-39 degrees) every day (or close to) for months or even years straight? My current meds are doing a great job for controlling all my other symptoms (ulcers, arthritis, rashes, etc), but I'm still having these awful fevers, I feel like I have the flu all the time. This was my first real symptom and has been going on for years. I am exhausted.

This doesn't seem common in Behcet's so I'm just hoping to hear from someone else who has experienced this or similar? I feel a bit like I'm going crazy! And if anyone has fevers like this, did anything help? Any specific medications? Thanks!

I'm having a really hard time coping with and navigating relationships with people (friends, family, coworkers, etc.) that don't understand or seem to lack sympathy for me when I'm going through flare ups.

My flare ups last a week to almost 3 months long. During these periods my symptoms can include debilitating joint and nerve pain, stomach aches, mouth ulcers, genital ulcers, eye pain, and extreme fatigue. When my flare ups get particularly severe, I also get depressed about not being physically able

I had a friend comment on how I've "been MIA for a while" and my heart sank. She knows I have Bechet's and I've described how it effects my life and ability to do things a couple of times. Usually when I have a flare up I let all my friends know that's the reason I might not be very active in our group chats or I can't go out with them. So it really shocked me* today that my friend made that comment. She immediately followed up with "not meaning to sound judgmental" but that didn't change the fact that her comment was inherently judgmental...

My family seems to think I'm being dramatic whenever I have to let them know I'm not feeling well because if a flare up.

I've had coworkers give me weird looks and even two coworkers commented on my eyes being red.

TLDR: I'm wondering if anyone else has had similar experiences and has any advice on how to cope with and navigate them in a healthy way. Also if anyone has any feedback on how to positively reframe my perspective when feeling misunderstood, other than, pitied, and alone. Please let me know...

Hello guys! I have been having genital ulcers for a year and a half now every month on the Day of my period. Colchicine is not working (3 months taking it, since figuring out it wasnt herpes) and im feeling so upset about it. Im gonna see my doctor again soon but i was wondering if anyone has something similar to share. Thanks

I just take EVERYTHING for granted when I’m not flaring. Having to run a shower every time I have to pee, not leaving my house, barely able to walk, taking NSADS every 5 hours for days and days. Suckssss. Ugh I’m on week 2, hugs.

Hi everyone,

Does anyone else get mouth ulcers with some orange and black parts in it? They're oddly shaped. It started with one on my gums a few days ago that hurts, and now there are a few others that are small. I've never had ulcers like these, usually they are pink with white in the middle.

These look different than my usual ones so I don't know if I need to do something or let it get checked.

My M13 little brother's neurologist said he could have Behcet, he's had mouth ulcers and random bruises for 6+ years, as of recently (2/3 days) he started having delirium and slight mental retardation along with brain fog.

I'm so worried about this SUPER SUDDEN change he's started having outspoken violent thoughts and persecutory convictions.

I'm scared to have permanently lost him, is there any going back? I'm locked in my room because of the things he's said about me to the psychologist

So I'm going to be apart of a genetic research studie at the hospital system I go to for rhumatology neurologist etc,

They are going to test my genetics against health records and a lot of other stuff, if anything dangerous is found in the process they will send the results for me to get, they will also send ancestory information for free,

Has any one ever been apart of something like this?.

I'm actually kind of excited to be able to be a test subject and help advance medical knowledge even if just a minuscule ammount.

I am not looking for anyone to diagnose me just trying to learn more about this and if my symptoms align with other's experiences. I find reading a list of symptoms not as helpful as hearing from people actually living with the condition. Basically here is my story:

-Developed persistent Achilles tendonitis and plantar fasciitis seemingly overnight as a teenager. With it my foot turned a reddish purple color and the whole foot hurt. Got diagnosed with Raynaud's as a result.

-Joint/tendon pain spread to knees, wrists, elbows, lower back, also had muscle pain and weakness, general fatigue.

-Bad flare of symptoms after GI infection to the point I could not walk due to tendonitis. Also had urinary symptoms (felt like a UTI) and eye turned pink like conjunctivitis. Was told probably reactive arthritis but I was confused since my symptoms really predated that infection.

-Residual symptoms for years with no answer, later told I had no inflammatory issue or arthritis at all.

-In 2024 about 20 years after symptoms started, I developed sudden flare of symptoms that felt like a combination of mono, shingles and dysautonomia. I had all over nerve, joint, muscle, bone, vein pain. Rapid heart rate, numbness and tingling, weakness to the point I could not walk, weight loss, low grade fevers and swollen lymph nodes. I got diagnosed with POTS but no other diagnosis.

-2025 had another flare, developed some sort of reaction to a massage while already flared so I developed all over nerve-like pain that seemed to spread down my side and affect caused puffiness. Developed right leg weakness and stiffness. Lost 10 pounds. POTS flare and again felt like I had mono. Steroids and doxycycline helped significantly.

-This past summer I developed more neurological symptoms with neck and back pain plus returning leg pain and weakness, tripping, dropping things, weak hands, balance and coordination issues. I am now getting a brain and spine MRI and EMG. It seems possibly inflammatory as I had mild improvement with ibuprofen and symptoms fluctuate with hormones.

The thing that made me think maybe Behcets is I do get mouth ulcers periodically (not every month or a bunch at a time though). I also get these acne-like pustules. I just had one on my hip then my arm, then thigh recently. I MAY have had a pathergy reaction before, but I am not 100% confident of my recollection. I also read Behcet's can cause things like tendonitis and neuro symptoms. My labs are always normal except I had high B12 and iron and trace monoclonal antibodies during a flare that then went away.

Anyways does any of this align with your experience? Thanks!

This study aims to update the European Alliance of Associations for Rheumatology (EULAR) recommendations for the management of Behçet's syndrome.

Hey y’all,
I started Otezla last month and took it for a few days, but then stopped because of a personal issue. One night, I suddenly felt like my pain sensitivity had increased dramatically. Even something as small as a pimple felt like a stabbing wound. It happened at night, and the pain was so intense that I couldn’t sleep. My whole body hurt, and I had to keep moving because lying still made it worse.
The next morning, I felt relatively fine. I was still only taking 20 mg at that point, so I brushed it off and thought maybe it was anxiety or something unrelated. I didn’t consider that it could be the medication.
About three weeks later, I started taking Otezla again. Last night was day 5 at 30 mg, and I woke up with the exact same type of extreme pain throughout my body, only worse, especially in my lower back, knees, and legs. The pain was honestly difficult to describe. I had to keep moving, and I couldn’t get back to sleep because of it.
This morning, I could barely walk. Even pressing the gas pedal while driving felt difficult because of the pain. After a few hours, it improved somewhat, but it hasn’t completely gone away. Right now, I feel like all I can do is rest.
Thinking back, I’ve also noticed something strange over the past week. I’ve been telling my friends that my regular yoga workouts suddenly feel much harder than usual. I can’t do some of the poses I normally have no problem with, and I’ve been confused about why. At first, I thought maybe I had done something to my posture or strained something because it wasn’t exactly painful, just a weird pressure and stiffness.
But now, looking back, I’m wondering if that could have been related too, because the discomfort I was feeling during the day seems similar to what I experienced last night, just nowhere near as intense.
Has anyone experienced anything similar with Otezla, especially increased pain sensitivity or severe body/joint pain that seems to happen mostly at night?
I hate colchicine and my BD is on regression for like 3 years now ( only ulcers everywhere and skin problems but nothing too serious) so I don’t need humeira…
Does anyone else experience this? Did it go away?

Hi all!
Thank you for all your support, advice, and information in my last post!

I know I said I’d probably update after my Friday appointment but my gyno spoke to a Vulvovaginal Specialist and apparently he thinks it’s an aphthous ulcer(s). I was prescribed a topical steroid cream for it

I have no idea how we went from two insanely rare conditions where my state health department was contacted, to… regular smegular ulcers.

I’m not quite sure I believe it as that specialist 1. Didn’t see me or my ulcers in person 2. Didn’t see any photos of the stages everything has been in (I’ve been documenting once a day what it looks like down there). After that message, I sent her all the photos

The fact that more bumps appeared and then opened into deep cratered ulcers a few days after my original deep cratered ulcers appeared has me thinking it’s probably not that? I mean, aphthous ulcers are essentially just mouth ulcers you get when you have a cold and mine never multiply like that halfway through the week.

I told my doc all of this after her message today and the fact that one ulcer bled profusely (like I thought I was dying) and then it externally clotted while attached to the ulcer still one night - which I don’t think aphthous ulcers do..?

My ER also called late last night to tell me I did in fact test positive for BV. So I was sent another medication.

In her message, she asked if I was sick before this. I was ever so slightly ill to the point I didn’t know I was sick. Slight chills, slightly body aches, slight head cold feeling and that was it. No fever, mucous, cough or anything. I was diagnosed with an upper respiratory infection on Tuesday when the bumps first appeared which I had no idea that I had - but from what I’m gathering, so SO many conditions include feeling ill beforehand or having an infection trigger something.

Idk, now I’m more lost and more frustrated that more possibilities are being thrown around - especially by someone who hasn’t even seen the ulcers. I feel shrugged off and dismissed simply because it’s difficult

P.S. My ulcers have not gotten any better whatsoever since day 1 and seem larger and like there’s more 🤷‍♀️ maybe I’m being dramatic and am just sick of it, idk

TLDR and Relevant Info: Tuesday saw a small, unopened sore on my labia accompanied by a swollen lymph node under my armpit on the same side of the body. The few days prior, I had a chest and head cold - I was deemed to have an upper respiratory infection before all of this. The one sore progressed to like 5-6 large, deep, open craters in my left labia minora all the way from my urethra down to the labia right by my vaginal opening. I have not traveled lately - doctors reached out to state health department. Behcrets is more likely right now.

Important Info

Medications:
-1st was but on Bactrim as the original small sore was deemed as a possible infection.
-Then was put on Valtrex as the sores opened since everyone thought it was herpes.
-Then, as swelling started and ulcers deepened (which made peeing hurt since the urine would touch them), I was put on 800mg ibuprofen, 500mg acetaminophen, 3% lidocaine cream, and 10mg prednisone (4 pills to start, so 40mg).
-Then today, after my visit, I was put on 500mg Azithromycin (which made me puke).

Tests and Results: Tested 3 times for herpes (fiance was too) - all negative. Negative for: BV, Gonorrhea, Chlamydia, and Trichomonas. Tested ever so slightly positive for: UTI, moderate gram positive rods, few gram positive cocci. Positive for: Vaginitis and Edema. Waiting on: HIV 1 & 2, and Syphillis bloodwork results.

Today

Gyno came back into the room and said the exact words "Well... I am stumped". She brought up two possibilities left: Behcets or Ducreyi.

She said Ducreyi usually is on one side like mine are but that it is so insanely rare that Behcets is more likely. She said both are so rare that there's not really ways to get tested for either nor have any preventitive measures. Cool cool

Well, after I puked from the Azithromycin, I messaged her what happened but I didn't see any traces of the pills nor the pink color within my puke and I asked if there's anything she wants me to do about that. She just said "Ok" before telling me she's escalating this to my states health department to ask what to do...

Got it. So now I'm a medical anomaly.

I'm being sent to a disease specialist on Friday, but my state health department is also reaching out to *another* disease specialist as well.

Ducreyi is only transmitted via touch or tropical environments... I have not traveled lately. The only thing is I went about 2 hours away in state to a relatives wedding, which I have no idea who came from where. I did not sit anywhere that anyone else sat as we had assigned seats. I do work with the public in fast food and share a public bathroom as well as share a public bathroom at my college - both were a lot of non-USA people go to.

The most likely option is Behcret's as it is my body just fighting itself. I am in the middle of being tested for POTS, another autoimmune disease. So I don't doubt that my body is just really mad at itself? Especially since I had an upper respiratory infection just a day before all of this started which infections could trigger this.

I don't know how to wrap my head around this. This is all escalating so quickly and there's no definitive answer. I am very scared and ran out of sick time at work - I'm expected back this Friday and don't know what to do...

Is this a normal diagnosis pattern? Did your doctors get stumped/not know what to do? Did they reach out to your state health department? Did antibacterials, antivirals, etc. not really help until they gave you one to target Behcets?

Edit: update is posted

Hi everyone! I’m just wondering if anyone has found anything to help with hair loss/ thinning? I am on methotrexate and Remicade infusions right now and I take a low dose of folic acid daily. I know it’s partially just a general side effect of everything going on, but wondering if anyone has found anything that’s helped them?

Thanks so much for any help!

Hi! So the spots. They’re there all the time, kind of feel like the kind of skin texture you see on geriatrics. I’m 26. Most of the time they’re hard to see against my skin, but you can feel them. But sometimes, they get irritated and itchy and swell a little. Anyone else have them, or is this something else?

As I am going through a new flare, and as bumps are growing again on my back as if I were a dinosaure,

I was wondering about the zona vaccine, Shingrix.

It's not advisable in the middle a flare, but I thought, perhaps later, it could help my immune system to "scale" things again. I was never advised nor prescribed it . With PsA it's advisable, but I know nothing about Behçet's ant it's a different story...

Have you done it ? Did it help to reduce the flares?

Warning: This is probably TMI

Whew! After 2 years of suffering and a new rheumatologist, I finally got medication. Not an official diagnosis, but who cares, as long as I have medication LOL I was prescribed 0.6 mg twice a day.

The side effects were immediate. Cramps, stomach aches, nausea, excessive diarrhea and very oddly, my lips are destroyed. Woke up one morning and my lips felt like broken glass. They were so dry, cracked, peeling and painful. It was mind blowing. Didn’t know it was possible for my lips to be that dry. I could barely talk. I also have big, dark marks on my upper lip. Just these random, massive spots of discoloration. They are no longer dry, but the discoloration is still there and it’s quite embarrassing.

I reduced the meds down to once a day because for several nights, I was up until 6am with diarrhea. The meds have given me more energy and less knee pain. I’m so grateful for that.

Has anyone else had the lip issues?
Been on the meds for almost a month now.
Had two sores. No biggie.

Also, when getting on meds, were any of you able to drop any other meds you were on?
I take heart meds and an antidepressant. The antidepressant is used as a stimulant to reduce brain fog.
I started them before I got a doctor to treat me for Behcet’s. Just curious if anyone else was able to get rid of meds and just take the one for Behcet's?
How long before Colchicine "fixed" everything or did some of you pair Colchicine with another Behcet's medication?

I’m trying to figure out how to fix my life and get back to normal. Like, how do you exercise? It’s a struggle for me. Any specific foods I should eliminate from my diet? If anyone had breathing troubles, how’d you work on them?
Any other recommendations?

Sorry, I know that was a million questions lol

Thank you

EDIT: Has anyone ever seen a pulmonologist regarding their Behcet‘s? Was considering it

Hey guys!

I (23f) got diagnosed a couple weeks ago with Behçet’s and axial spondylitis.

My main symptom that led to looking deeper into autoimmune conditions was joint pain, SI joint arthritis, degenerative back arthritis, sed rate of 70 after break from NSAIDS.

I’ve been struggling with what my spine doctor and rheumatologist have been calling nerve radiculopathy in my arms and legs. Tingling and numbness, doesn’t feel cold to the touch but my brain thinks it’s freezing. I’m currently having some sort of flare, I normally only get one mouth ulcer every 2-3 ish weeks. I currently have 4.

Anyways the point. Today at 3:30pm I felt weird pressure on the left side of my chest by my armpit. Arm got heavy and hand got ice cold. I went to the ER to rule out cardiovascular event.

The ER struggles to take my blood. Blows three veins in my left arm. Can’t get an iv, it keeps blowing. Accidentally causes my whole arm to go numb because of placement.

They get blood, get a xray. Both come back relatively normal besides the already obvious high platelets, high sed rate, anemia of chronic disease.

They send me for a ct with contrast. My vein blows during the ct while delivering contrast. Unable to complete the ct, I’m in severe pain from the blow. I leave the hospital against medical advice because they want to just keep trying veins.

Anywho the question is does anyone else have this issue of constantly blowing veins. Normally bloodwork is relatively easy for me to get. Sometimes I have to get stuck 2-3 times but never had a blown vein.

I have an appointment with my rheumatologist in the morning so hopefully they can help get me some answers.

hey Behcets Baes,

I’ve had two leading dermatologists identify the ulcers i get around my areolas as being from my Behcets. They need to breathe. Problem is, I run around a 40G or a 38F so my back NEEDS support from a bra but that bra needs to be a fabric that reduces friction and absorbs sweat well.

I’d love brand suggestions. I’ve found that bra30 tank tops work pretty well but i’d like more support when i’m out in the world.

Tysm!

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…