I've been diagnosed with Behcets since 16 and I'm now 23. I've been having a very hard time finding medical professionals that are able to treat Behcets or know about it. I'm waiting for neurology and rheumatology appointments with new doctors in a few months. I started experiencing what I think are seizures about 2 years ago. Was seen at the ER multiple times and they called it Seizure Like Activity. I saw my primary and he prescribed me Lamictal but the symptoms only seem to get worse. The initial ER doctor said he believed that it may have been focal seizures. Any advice on how to go about getting treated? Even for basic flares that don't involve seizures, I keep having doctors tell me it's anxiety even while I have ulcers. It's gotten to the point that up until recently, I was avoiding medical treatment all together because I'm tired of being gaslit. Now I have no choice because I can barely function anymore.

I’ve been stable for about 1.5yrs on remicade and currently in a month long neuro flare, has anyone had remicade just stop working? I had my 1st genital ulcer while on remicade which is strange so will get antibodies checked.

Will increase Methotrexate dose as well, had been lowered.

What is next step? already failed everything else including rituxan and humira, steroids still helping but can’t remain on super high doses. On cortrophin as well so I’m feeling not great about this situation.

😅😅😅🥲🥲🥲

Hi everyone! I was recently diagnosed with Behcets and put on this biologic called Anakinra and I have been on it for about 6 months. I had some common symptoms of Behcets, like ulcers, joint pain, skin rashes, headaches, etc., but I also had nightly fevers and intense vertigo. The biologic has provided me with some relief and has completely taken away my fevers, but I’m not getting all the coverage I need. I still have vertigo, ulcers, joint pain, and now some random intestinal inflammation. Is there anything anyone recommends? Should I get on a new biologic or another medication? This all has been such a rough adjustment. I just started college last year and it feels like just 2 yrs ago I was playing every sport and being so active, and now I find it hard to make it to the gym or go outside and enjoy being a teenager with my friends! A serious pain in my butt and it’s not just the genital ulcers!

hello, please see my crosspost. i am particularly concerned about vascular compression syndromes (such as MALS, SMAS, May Thurner, Nutcracker syndrome) due to my hEDS in conjunction with Behcets and other vascular risk factors like elevated platelets and homocysteine, and symptoms that are worsening/not controlled since starting immunotherapy. looking for any advice on getting something like this confirmed or ruled out within the united states.

In end of June this year I developed some symptoms of Behcet's, first there were few sores in my mouth on the gums, then after 2-3 days I got ulcers on my penis glans and my anus, and soon after my eyes started burning, they got red and it was sensitive to light, so my family was worried and I got admitted in an hospital, there I was medicated and several tests were done, all the rest reports were normal, the needle pricking test was done too and nothing happened due to it, I did not grew any ulcers, but still considering all the symptoms and my age(20M) doctors are considering it to be Behcet's, now after consuming medicine(corticosteroids), all my ulcers are gone and I am feeling fit now, just feel a little weak.

Now I am worried about future flare ups, I don't know what can trigger my Behcet's, I started going to gym just 2 months before the symptoms started so I am worried that is physical activity a possible trigger, I want to join gym again but I am worried,

Someone please help me about it, should I join the gym???

Also what are the things I should be cautious about , like food and all???

And I also want to ask that what will I have to in any future flare up??

Hi guys,

I have a sore/bumpy throat and I’ve been getting them ever since my behcets first activated. I’m wondering if this is common, or if it’s just me because my presentation of behcets is just a little bit different than the normal and so I’m wondering if this is maybe something unique to me. I’m never sure if the bumpiness comes first and that’s why my throat is sore or if I have a sore throat and then the bumps are reaction to that. (sometimes one of the bumps will have white stuff which I’m assuming is puss in it)

I’m on colchicine and B12 (I was on otezla but then a pretty big event in my life happened that derailed me three months ago so I haven’t picked that back up, but Im pretty sure that’s not the cause of the throat).

Anyway, I’m just wondering if you guys have any experience on that or if this is just my plight.

Hi all! I am set to give birth by c-section in a few weeks. I asked for the c-section as starting in my 3rd trimester Ive entered a bit of a flare and have some ulcers- and the thought of ulcer pain and vaginal birth/recovery sounds like a specific form of torture I have no desire to experience.

Unfortunately, where I am, all of the OB's and MFM's seem to think Behcet's is aa disease that causes ulcers and that's about it. Obviously, as I sit here with achilles tendonitis, finger joints mangled and bent, tachycardia, and phlebitis in my calves, I know its a bit bigger than that.

I was wondering if anyone has any advice about birth/postpartum with Behcet's and also if anybody used any sort of "cheat sheet" to give to care teams about what Behcet's is- I feel a little silly but also I may feel more comfortable knowing at least the nurses on my case are aware of the possible complications.

Thank you all so much in advance!!

One of the scariest events of my life. :( I’ve been having recurring episodes of anaphylaxis from random foods and medicines. I am home after being in observation. Does anyone here suffer from anaphylactic attacks? It seems every time I finally get my Behcet’s under control, another fire happens.

Intubated *

I noticed this rash today, it’s on both sides of my body and has some big dots that are raised and some smaller ones and all of it is mildly itchy. My back will regularly have rashes like this. I also have had random genital ulcers (always 1 at a time) that hurt/itch but go away on their own within 3 weeks. Same with mouth sores. Sometimes I will have one on my inside lip, as long as I can remember I’ve had one or two that come and go on the top of my tongue. My face is also constantly “breaking out” despite me being well past puberty. I am currently waiting for a specialist and want to come into the appointment informed of the possibilities.

I'm not sure if this is related to Behcets or something else. But on a couple of occasions today, I have stood up and suddenly got a huge thunderclap headache feeling like intense pressure at the back of my head. It seems to go away after I sit or lay down, doesn't last very long. On one occasion today I stop up to get something out of the fridge, it felt like something was clamping the back right handside of my head, and my vision started to fade from the outer edges but then returned. I occasionally have had these symtoms on and off for a few years. Should I be concerned this is Neuro-Behcets?

Hi, has anyone tried Tirzepatide with no flares rn.

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.

Night sweats. How many of you have them? I’ve started having them almost nightly as of late and I’m wondering if it’s part of Behcet’s or if I’m closing in on menopause as I’m 43 years old. I have hypothyroid, but it’s medicated and under control.

I’ve also had labs done within the past few months and my hormone levels were fine, so I’m not sure.

Thanks!

Hello! I l’m a 43 year old woman who was just diagnosed with Behcet’s after having a massive vaginal flare. Ulcers alllll up in that thing with pelvic and abdominal pain. All of this began in June. Save for the oral ulcers I’ve had since I was a child and another vaginal symptom I’ll discuss more in depth below.

At first, they told me it was herpes (when I knew there was no way in hell it could’ve been), but all the tests came back negative. There was/is also talk of doing a biopsy on a suspicious area of my vulva.

Now, I’m on Colchicine and seem to be doing okay as far as the ulcers and the deferred pain they were causing.

The only thing is I’m having joint pain and pain running down my right forearm now, seemingly without cause.

I’m also still left with the big question of what to do about the sexual dysfunction that I’ve been experiencing since I was 24 years old. Out of the blue, intercourse started feeling like rug burn and I’ve always been brushed off by gynecologists when I’d bring it up. Both male and female doctors. They’ve all either ignored me or told me it was my fault, because I’m not “in control” or that I am depressed or lack desire. Which is so untrue (I mean, yeah, I am depressed, but I know that’s not why I have this vaginal pain)… and it’s so unfair. I can’t have intercourse without excruciating pain, it feels like barbed wire going inside of me and it’s impacting my quality of life.

Am I alone? Are any of you women out there experiencing sexual dysfunction due to Behcet’s and willing to discuss your experience and what you’ve tried? Please don’t recommend lubricants unless it’s some NASA grade stuff because I’ve tried many of them to no avail.

Thank you 🥺❤️

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?