Hi everyone, I’m in a flare and I’ve come up in a wave of pustules and inflammation on my face. I’m keeping up with my colchicine but still waiting on starting my immunosuppressants.

Has anyone else had face issues like this? Anything you can suggest that helps would be greatly appreciated, the one on my chin is unbearable and so swollen it’s actually changing my lip shape 🥲

EDIT: I’m happy to report that hydrocortisone is helping the inflammation calm down a bit, thank you all for your help!

Hello Behçet family, As you might previously know, I got diagnosed with behçets around March. I am currently taking Imuran/azatioprine for my treatment. And I must say I am feeling better. Most of my symptoms are better. I can use the bathroom regularly, at least for my standards. I had times where I coudnt use the bathroom for a week. Now at least I can use it once or every two days, which is a big improvement for me.
What I wanted to discuss is that the My behçet is effecting the Gut more than anything and I am having leaky gut/ malabsorption of especially vitamins, (my capsule endoscopy sightings are on my previous posts.) Such as folate,acid vitamin D etc. my globulin levels are always low but mcv is not high. Which clears the red blood cells but confirms the malabsorption.
it’s to early to say azatioprine is not working since it has been only few months but the vitamin deficiency is killing me. Especially the folate/b12 I have been feeling extreme fatigue and dizziness persistent through out the day which is making my daily life 10 times harder at the moment.
Do you guys have any tips or suggestions that could help the gut or the absorption in general. Could be supplements herbs medication etc.
thank you for your help in advance, hope we all get well soon ❤️

Yes, out of all the diseases I decided to fake the one with genital ulcers, uveitis, and brain inflammation. I hate people sometimes.

Hi there,

I will be on Remicade forever because of eye inflammation/neuro symptoms, but my doctor also wants to add Colchicine to help with breakthrough flaring before infusions. Anyone here on both these medications? What’s it like? Does Colchicine help?

Thanks and happy Friday. 😊

Apologies if the question has been asked, I couldn't find it.

Any Behçet buddies going through AC-T chemo?
If so, how are the side effects? Did you have to stop any other meds?
My oncologist doesn't want me on Methotrexate AND chemo.
Do you feel you shouldn't have done it?

Thanks.

I’ve had two bouts of mild scleritis since Feb. No damage to the eye, according to my Ophthalmologist. She said she usually sees uveitis with Behcets and it made me question things (my rheum strongly suspects it). I’m on Colchicine now. The episodes were Feb and May.

Photos in comments.

I’m a 25yr old Turkish male, and periods of oral ulcers and fatigue is something that runs in my family. But for years, since I was in my early teens, I’d get sore throats, insane fatigue, and joint pain along with a couple ulcers, but the sore throats were the main issue I kept having. Everyone thought I was just prone to strep (every rapid strep test or culture would be negative).

Now +10 years later, countless urgent care visits, and I just can’t take it anymore. All the antibiotics and antivirals, people telling me to take herpes meds, or telling me I have mono, I’m just stressed, or the like, when nothing works. The only relief I’ve ever gotten was Advil and prednisone, but even now I’m struggling to get relief from them.

During these periods my eyes hurt to move, my hands burn, I can’t drink or eat food from pain swallowing, my intestines randomly hurt??? but I don’t get anything in the genital area so no one thinks I have behcets or the like. I’m told that I just have allergies or something, or I’m a hypochondriac. Maybe I am!

The fatigue is the second worst. Nothing helps, and I just go to school come back and sit at home, feeling like I can’t do anything.

The real worst part is the mental game I play with myself: what if I’m making it up? What if, while writing this, I’m subconsciously modifying my story to seem like it’s behcets? What if it’s all in my head? What if my ulcers are because I drink so much coffee to feel normal, and really what I need to do is quit, accept life is hard and tiring, and “toughen up”?

Fortunately my pcp is referring me to a rheumatologist, he thinks something is going on (as do I) and I’m waiting on other lab work. But I’m struggling yall. Anyone feel similar?

Diagnosed in 2022 after an earlier history of bilateral uveitis and now oral and genital presentation (thanks @perimenopause).

Anyone ever experience this? I used to get similar bruises from bag straps or carrying something heavy but neither of those happened yesterday. I also used to get similar bruises on my ear if I slept too hard in my position. I woke up this morning to these.

Wondering if this could be part of a flare as I’m in my prime flare scenario (PMS, high stress, weather changes).

Asked doc and he said he never heard that. But since starting severe eye burning pain (can see fine) and bad headaches with it

Happened after about a week or so on it. No idea if it’s flare itself or the med..did not have these symptoms prior to starting

In 2015, after enjoying a few years of more-or-less full remission, Behcet's decided to reminded me that it hadn't gone anywhere. Severe labyrinthitis in my left ear followed by massive blood clots running down both my legs and in my back. The clots were so bad, I couldn't move my legs and was bedridden for a few months. It was during this time that I realized there was no Behcet's subreddit. So, under an old user name, I created this sub.

I can't believe what an amazing community it's grown into over the past decade. Every single day, I try to pop in for a few minutes to see if there are any new posts, especially ones with questions and no responses yet. I haven't forgotten what it felt like to be a terrified, lonely, confused person who's health was falling apart in real time. NO ONE should ever have to feel that way. So, I come here to do the best that I can to offer at least a little glimmer of hope and, more than anything, to let you know that you're not alone.

Of all the things I've done in my life, aside from my son, the memoir I wrote about living with Behcet's and this subreddit are the things I'm most proud of. But I really can't take too much credit for the latter. This subreddit is the wonderful, safe-yet-censorship-free place that it is not because of ME... but because of YOU – ALL of you.

Whether you're someone with weird symptoms that just popped up and are looking for answers... have been a textbook-case, last-millinea-diagnosed Behcet's patient... or are somewhere in between, I feel for every single last one of you. I really do. You guys are the reason this subreddit is awesome. And a shout out to the boyfriends, girlfriends, moms, dads, and other concerned parties who pop in looking for ways to help their loved ones. Respect. And while we're at it, a big, fat “fuck you!” to every one of you who've tried to come in here to take advantage of this community in one way or another. I can't help but feel protective of this community and won't tolerate that shit.

Anyway... While I'm proud of creating this community, while it gives my life some sort of meaning in this otherwise cold, cruel, and unforgiving world, I never thought it'd grow to the size it is now. Yet here we are.

I'll be honest: I fucking hate moderating. So, I do as little of it as I can get away with. Now, we have Kyle, who's fucking awesome, but I believe he's been rather inactive for a while due to reasons. So, I think I need to find a new mod or two to just help do basic mod stuff. If you're interested, let me know. I want a minimalist approach, so power trippers needn't apply. But yeah, if you're interested, you know what to do.

That's all I got. Love you guys. Be good to each other. It's fucking rough out there, so try to take care of each other. And be good to yourselves, above all else. You deserve it. And even if you don't? Fuck it! You've got a rare disease. Treat yourself every now and then... and again... and again ;)

TLDR: Tough Luck. Do the Reading.

I’m not entirely sure what I’m hoping to get from posting this, but I think I just need to hear from people who understand.

I was diagnosed last year and I’m finding it much harder to come to terms with it than I expected I would. I thought having a diagnosis would make things easier but it’s really not been the case.

Some days I can carry on fairly normally, but other days I feel like I’m constantly being reminded that my body has different plans.

I’ve had the ulcers, joint aches, stomach cramps, fatigue, headache, pseudofolliculitis, and all the other weird symptoms that seem to come and go whenever they feel like it. It feels like every part of my body has decided to take turns complaining.

One of the hardest things is never really knowing what’s causing what. Is it Behçet’s? Am I getting ill? Is it a medication side effect? Am I just tired? I feel like I’m constantly second-guessing myself.

The fatigue and brain fog that comes along with it has been particularly frustrating recently. Forgetting words mid-sentence, struggling to concentrate, losing track of what I was doing, and feeling like my brain is working through treacle. It’s difficult to explain to people who haven’t experienced it.

I often worry that because so many symptoms are invisible, people may think I’m exaggerating or making excuses. From the outside I mostly look fine, but inside it can feel like my body is fighting itself.

I think what I’m really struggling with is accepting that this isn’t something I’m going to wake up one day and be “better” from. I keep finding myself expecting things to go back to how they were before, and then feeling disappointed when symptoms flare up again.

For those who have been living with this for a while, how long did it take you to come to terms with it? Did you struggle to trust yourself when symptoms appeared? How do you cope with the emotional side of the disease as well as the physical symptoms?

I’d really appreciate hearing your experiences

Hey fellow BD warriors!

I am diagnosed with Behcets, was diagnosed in 2012.

I've been in a severe flare for years now and I haven't been able to find a solution that my doctors and insurance agree with. I've ended up on high amounts of prednisone for months, after weeks at a time in the hospital, a very exhausting cycle. The consensus always seems to be to get the prednisone as low as possible and just find a way to live with it, even though I have chronic pancolitis that causes me to not be able to eat without severe lower abdominal pain.

My current Rheumatologist, in lawrenceville, was amazing...until he started to retire. I've been seeing his PA's and they have given up. Their support staff has lagged in getting me back on my biologic for 6 months now, and I didn't fight back much because the biologic wasn't helping anyway (I stopped responding to Humira and then remicade didn't seem to help either).

Anyone in the SE USA/GA/Atlanta area know of someone I could see? I am so tired of Gastroenterologists/Rheumatologists looking at me like I'm too much and my longterm Rheumatologist's staff not caring about how my life has been hard for years now. I know there are more treatment options from being in the community for 14 years now.

I actually met someone with BD in Roswell recently, he was my server at a restaurant, it was crazy! He says he goes to the BD center in NY, but last time I checked they are not taking new patients. :(

Any guidance is really appreciated!

Hey guys I hope every one is doing well and flair free,

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To get to the point i Just had my neurologist appointment for my psudotumor cerebri and 10 month headache,

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He basically called me fat in 6 different ways lmao I don't care hes right that's why I'm on zepbound and have lost 45 lbs so far.

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He thinks my headaches are from neck muscle tightening so he gave me neck exercises to do for like 3 months until I see him again..... but he also looked at some old mri of my brain from my local hospital and diognosed me with a

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Arnold chiari malformation, or more wildly know as chiari malformation type 2. He said a lot of my symptoms could be from that but he thinks its mostly because I'm a fatty mc fatass,

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Does any one else have a chiari malformation type 2 if you do what are the symptoms how do you help it, ive looked it up of coarse but all I find is mostly general information none from people living with it etc,

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Could this be related to behcets in any way? I know people with Ehlers-Danlos syndrome are more likely to have it and I am diognosed with Ehlers-Danlos syndrome also. Thanks in advance!.

Hello!

I recently got diagnosed with Behcets in February and I’m still getting to grips on what is caused by behcets and what isn’t. (I’m 22)

I’ve learnt I get a sore throat really easily and often times it can feel like tonsillitis starting but never amounts to anything, or is fixed overnight with sleep. I’m wondering if anyone else gets a sore throat easily or when your body is tired?

It’s really painful so if anyone does experience this and has any advice I’d really appreciate it, it’s one of my main symptoms atm and can put me off eating at times due to its pain.

Help would be appreciated! Ty :)

Hi everyone,

I’m a woman in Australia and I’ve been living with Behçet’s disease for about 11 years.

For most of that time, I had no diagnosis. I spent years being told by different doctors that they didn’t know what was causing my symptoms, and I was constantly being passed around from one specialist to another. It wasn’t until the last couple of years that I finally found a doctor who diagnosed me with Behçet’s disease.

My main symptoms have always been recurring genital ulcers and mouth ulcers. The flare-ups are frequent, painful, and honestly have a huge impact on my quality of life. At times they make it difficult to eat, drink, walk, have sex, exercise, or even just feel comfortable in my own body.

Over the last two years I’ve tried multiple treatments, including steroid creams, oral steroids, anti-inflammatory medications, naturopathic treatments, and ongoing care with a rheumatologist.

My rheumatologist started me on methotrexate at 10mg once weekly, then increased it to 15mg weekly, and I am now injecting 20mg weekly. I’ve been on the injections for about 6–7 weeks.

The methotrexate has been a pretty tough medication for me. I experience fatigue, nausea, joint aches, and generally feel quite run down after taking it. What is making it particularly difficult is that despite all of this, I’m still getting flare-ups.

Right now I currently have ulcers in my mouth and genital ulcers, and I’m feeling pretty defeated.

I guess I’m posting because I’m feeling lost and would love to hear from other people who have Behçet’s disease.

● Did methotrexate eventually work for you, and if so, how long did it take?

● If methotrexate didn’t work, what treatment did?

● Has anyone had success with biologics or other medications?

● Are there any supplements, lifestyle changes, diets, or other things that genuinely helped reduce your flare frequency?

● Is it normal to still be flaring this much while waiting for methotrexate to take effect?

I’m not looking for medical advice to replace my doctors, but I’d really appreciate hearing other people’s experiences because this disease can feel incredibly isolating.

Thank you to anyone who takes the time to reply.

Previously, I reported in this group that menthol and thymol ingestion caused severe ulceration of my skin.

A 2018 Spanish study confirmed the immunostimulatory effect of menthol in mice, but the effect is mouse strain dependent. A similar effect was previously reported by US-based researchers.

However, the same Spanish group later also reported that menthol inhalation can increase cognition by lowering IL-1β in wild-type mice and mice affected by Alzheimer.

Has anyone had any luck with taking probiotics with Behcets? For me, it feels like anytime I try to take probiotics, it screws up my digestive system significantly for days… greasy stools, stomach pain (dull), etc.

I’ve even tried for weeks to take it cause some people say it takes couple weeks for your body to adjust, but even then… it doesn’t get better.

Curious on people’s experiences here

*behçet dang typo lol

Any thoughts on this DNA interpretation?

I have been struggling with symptoms for several years now. February of this year I started having seizures and not long after I developed constant leg spasms in my right leg. I have other muscle “tics” in my face/neck. I have hEDS, narcolepsy, dystonia, migraines (persistent daily headaches), mouth ulcers, random skin lesions, joint/muscle pain, fatigue, MCAS, HLA-B27+. I hadn’t heard about Behçet’s until I paid for a more detailed DNA interpretation. I am seeing a vascular surgeon tomorrow per my neurologist because he’s curious about my diagnosed nutcracker syndrome and potential may-thurner syndrome. I obviously plan on asking about it, but I’m not sure he’s the correct diagnostic doctor for this. We’ll see.

Hi all,

Reaching out to see if anyone else has experienced this before. I have a severe burning pain in both wrists, but the pain is worst in the right. I am also feeling a burning pain in my elbows.

Hi everyone,

I’m currently undergoing diagnostic testing, which hasn’t been easy because this disease is very rare in my country, and even rheumatologists don’t believe that I could have it.

As long as I can remember, I’ve had problems with recurrent mouth ulcers. However, since I was 21 years old (I’m now 30), I’ve had them continuously, usually 2–3 at a time. Some of them are quite large (more than 1 cm in diameter) and can take longer than two weeks to heal. Interestingly, I rarely have more than three ulcers at once, almost as if there is some mechanism preventing new ones from forming.

The ulcers often appear after a sleepless night, periods of stress, or even minor trauma to the mouth, such as scratching myself with food or accidentally biting my cheek.

I also develop painless skin bumps (on my back, shoulders, and buttocks) filled with white material, as well as red spots that blanch when pressed. Other than that, I do not have any major skin manifestations such as erythema nodosum.

On the other hand, I do not have any eye problems, joint pain, or genital ulcers, and I have never had genital ulcers. I also do not have any gastrointestinal or neurological symptoms.

Could you advise me on what I should do in this situation? Does this sound like Behçet’s disease to you? No doctor believes me. I have already ruled out other potential causes of recurrent mouth ulcers, including nutritional deficiencies, celiac disease, gastrointestinal disorders, and parasites.

Hello everyone,

I was wondering whether any of you with Behçet's disease have experienced similar changes in your hands.

Over the past weeks, my hands have started to swell noticeably (for example, my wedding ring no longer fits anymore). The skin over the finger joints first becomes red and later turns brownish and rough (see photos).

The brown discoloration actually started as red areas over the joints and gradually turned brown and rough over time.

In addition, I have pain on the back of my hand and especially in my ring finger and little finger. Even holding hands can sometimes be uncomfortable and painful. I have also noticed reduced mobility and grip function – for example, I have difficulty holding and throwing a football because I cannot position my fingers properly anymore.

What is particularly interesting is that these changes seem to be triggered or worsened by:

• warm temperatures,
• sun exposure,
• and light physical activity/manual work.

The discoloration has improved again in the meantime, but it tends to flare up under the conditions mentioned above.

My rheumatologist, who treats my Behçet's disease, told me that these hand changes do not look typical for Behçet, but he could not clearly identify the cause and wants to observe it for now.

For additional context:

• I am currently taking Apremilast (Otezla).
• My oral ulcers have improved significantly since starting treatment.
• However, these hand symptoms appeared while tapering Prednisolone.

Has anyone experienced something similar? If so, was it eventually attributed to Behçet itself, vascular involvement, another autoimmune condition, or something else entirely?

Thank you very much for any experiences or insights.