r/Behcets

Does anybody else also gets flares when they take collagen? I noticed after months of not having symptoms each time i try to reintroduce collagen i’ll get ulcers

Does anyone else have sharp joint pains? Like in ligaments.. jumping from joint to joint each day??
Like tonight my wrist is so sore I can’t move it, but this morning my knee and ankle were dreadfully sore?

Yesterday was my other ankle and my other wrist..!
This has been going on for some weeks, I’ve doubled my dosage of injectable medication and pain meds don’t help.

Anyone else got this? Any tips?
Please help… I’m getting desperate…

I’ve posted on here before about how I wasn’t sure it was Behcets because my mouth ulcers weren’t that bad. Well… jinxed myself.

I’ve been feeling really self conscious about it now because I’ve had two of my friends make comments about it being herpes. It’s just not something I anticipated having to explain.

My partner also made a comment about how they’re gross, which I have since talked to him about and told him it made me feel really bad. He apologized and it’s been resolved but I feel like this is just another thing to feel self conscious about.

Does anyone else feel this way? How have you managed?

I’m starting colchicine so hopefully that helps.

28F so about 10 years ago I was diagnosed with painful bladder syndrome/I.C. I’ve had other issues with vaginal inflammation/itchiness and what I’ve thought were zits. No swabs tests etc ever came back for anything serious. I get sores on my tongue/back of throat never really gave it much thought as they aren’t really bothersome.
As of late I’ve been diagnosed with retinal vasculitis which has been devastating. Trying to find an immune cause which led me to read about this. Still awaiting more labs.

Medical literature seems to suggest that both Behçet syndrome and autism spectrum disorder (ASD) are linked to gene variants stemming from Neanderthal introgression.

I also saw ASD mentioned in another thread here.

I have both a father and a son who can be considered as high functioning autistic with successful social adaptation strategies. My father also had MAGIC syndrome; my son thank God not. Myself, I might have some autistic traits, but nothing really serious.

Hence my inquisative question: Were you or any family members diagnosed with ASD?

EDIT: I forgot to mention my little niece who has more severe ASD and ADD, requiring home schooling.

Hi,

I'm 16(F) and for the past 3+ years, I've had chronic daily mouth ulcers. 8 months earlier, I lost my ability to play my clarinet and saxophone because anytime I ate or put anything in my mouth in general, I'd bleed - I had to decide between playing and eating. I was in two bands and was living off of smoothies for about 3 months.

It's gotten bad enough I've been going to Shands off and on; I've bounced between 2 different specialists and am off to another pair, and here locally, I only see a dermatologist. My dentist even recognizes me as an extreme oddity. That aside, I feel no doctor I've met with takes me seriously other than my dermatologist; I really need some help. I'm stressing over so many different possibilities and I'm so scared that this might end up so much worse.

It started out when I was younger; I remember at least having canker sores when I was about 8; it was the first time I had ever gotten strep and now I'm super prone to it; after every bout my flares get worse. They popped up every once in a while back then, but over the years, they've gotten persistently worse. I really couldn't tell you when exactly I started having them daily; it's all a huge blur and I never documented it, but I even think it's been closer to 5 years. I wish I could've documented them back then, but my doctors all told me it was normal for a hormonal girl to have canker sores and wrote it off. I'm not trying to throw anyone under the bus, but I know my history is longer than 3 years. I also experience all 3 types of Apothe Ulcers -herpetiform, minor, major. They also appear in my throat and have permanently altered my voice to sound more raspy (I got a scope done though and they said they didn't see any scarring, but my throat looked irritated; I've seen them in the back of my throat before though and have had that same sensation further down.)

I want to take a moment to talk about some other symptoms of mine, other than the extreme mouth ulcers I can get.

I've been experiencing joint pain in the shoulders, hips, knees, ankles, wrists and fingers for YEARS. I started having issues when I was about 9. For some context (not sure if it means anything, as I would've likely been over it by now), I was a competitive swimmer (6-8) as well as a musician (12-present [play flute & etc.]), so maybe that could explain some of it in the wrists and fingers, but my wrists started way before I ever got into music. My shoulders are the worst in comparison to the others. I remember taking a state standardized writing test when I was 11 and crying because there was such a BAD pain in my shoulder out of no where and I was panicking. My shoulders always hurt a little and hurt more with movement since I was 9, and I remember seeing an Orthopedist when I was about 12 for it once. They saw nothing wrong with my shoulder and referred me to rheumatology at Shands, but we never went.

I've had some GI issues for a while now - not necessarily stomach pain, but in my intestines. I have diarrhea about 1-2x days a week, sometimes more and similar with being constipated. Sometimes I feel something "drop" in my intestine and it's painful- it doesn't matter if I have diarrhea or am constipated, it'll happen for both although it's not as common as it was. Not sure if this would fit the category here either, but I also wake up nearly daily with an extreme sore throat - it doesn't matter if I have postnasal drip or not, I will usually have a sore throat (like I have right now). Sometimes it's mild, but right now and often, it's very sore.

I also have been having a dry tongue; I mentioned this to my dentist I saw Tuesday and she immediately downplayed it saying the rest of my mouth looks wet - that's not the point. It's only my tongue that's dry and it's super irritating. Anything I eat/drink leaves a BAD aftertaste in my mouth and I think it started about 6 months ago. Ontop of that, I don't think my tastebuds are growing back properly; I've lost a lot of my taste over the past few years.

Another weird thing related to "dryness" - I have issues crying out of my left eye and have for years. I remember back when I was 9, I had a hard time crying from it unless I was bawling my eyes out. Sometimes, after blinking, my vision also goes blurry, and this can be in either eye or both; it can last from 30s-20min. I also don't sweat unless I'm on my period.

My symptoms cross over multiple areas and I'm an oddity due to my normal bloodwork - everything has come back normal, including the Ig family, vitamins, viral; everything is normal. I feel like no doctor I've been seeing is taking this matter seriously, even though it's clearly affecting my quality of life. The only thing my ulcers have been responsive to is colchicine and I just started about 3-4 weeks ago. I noticed they're smaller than normal and I had a day where I didn't have any - that was the best day I've had in my life.

I'd also like to briefly skim over family history - my paternal uncle died when I was about 9, so I can't ask him personally, but according to everyone, his story is the only one that matches mine. Growing up, he was on a lot of antibiotics for strep and other things. I just question what really was going on - my grandpa has psychosis and told me that before he died he was diagnosed with some kind of disease, but I can't really tell you if that's true or not. His death was very traumatic (he was hit by a train around christmas) and my family cannot decide between murder, suicide or accident because all evidence points in either direction. That aside though, he did have a very similar history to me.

My parents both have had a history of canker sores - my dad gets them all the time (not as much as I do though). His can range between herpetiform and minor ulcers typically, although sometimes he has a major ulcer. His other siblings all have a history with them as well, but the extent, I'm not so sure. My paternal grandfather also has a history of them (he told me to put rubbing alcohol on them multiple times, but I don't take his advice for obvious reasons). He gets minor ones, and his wife also can get them (rarely).

My dad, on an unrelated note, has an occasional episode where he feels like he's going to pass out or have a stroke (it's really scary). Doctors can't do anything for him because he's a stickler about going to the doctor. He's a 42 y/o mechanic though, so maybe that could cause something weird. I just know I should mention that.

My question is, what does this sound the most like? Please, if you have a moment to give a potential answer, I'd really like to know. I'm tired of going to doctors offices (specifically Shands) just to be introduced and be let down. What are the next steps? I'm scheduled for oral medicine and rheumatology but I have no idea when there appointments are. I'm open to more questions if those are needed, I'm just in dire need of help. I'm losing the ability to like my life.

Thank you so much for taking time into reading this and I hope you all have an amazing day!

Anyone else concerned that the disease itself can drive a person insane from pain and inflammation; and on top of it there is medical trauma? This is a real question. Anyone else concerned?

Whenever a medicine finally starts to put out the fire on a flare I am always amazed. I am totally exhausted and injured x but also amazed. Anyone on here have insights on this? Is it like being continuously “pain born?”

Also, anyone else think it’s hereditary and some families/care communities know it and take pains to make sure it doesn’t “activate” which is something generally missing in society and it makes it worse?

What about finishing up a big or long, likely unnecessary because medicine, flare with hope and you have to restart your life…again? Or is that a different post? 😂😢💯

You know, when you feel a little better and you look around and you have to just get up, tie your shoe laces and keep going, outrunning bears?

Before this last flare I was an educator. This is basically a closed chapter now. Maybe it’s the same as I would tell my students which I wrote above: you dust yourself off, tie your shoelaces, and keep running whatever it means to you no matter what your goals are; and hopefully one meets people along the way who see one’s good qualities and help them on the path.

I’m still with the Redditor who reminded me about the Behçet’s Centers in the UK. We can do more when our time isn’t wasted with this that and the other. I am deeply offended by the idea that anyone suffering for any reason is told in any way that they are here on this earth to manage ourselves and other people managing our suffering in a out of control and inefficient bureaucratic system. The goal of systems is to manage problems in favor of and for LIFE: to still live.

Is not this why we are here no matter our condition? To do more? To participate? To contribute? To live? To use what makes us unique to help the larger story of all of us unfold more beautifully?

These are not naive categories. I was an educator in oppressed communities for more than a decade trying to keep hope alive for others even as I was burning down physically.

I read a question on Reddit: “What would you tell your 18 year old self? You only have three words.” My within the burnt soup of a flare answer, y’all do not want to know. My two days into “The Predni Zone” answer is more me: Keep. Hope. Alive.

I keep getting pain born and I mostly wake up with these same three words. I wake up with less people and with less of me but I wake up and I wake up with those three words. Sometimes the third word is simply Life.

Thanks for reading.

✌️ ✌️ ✌️

(Hopefully this isn’t all an effect of The Predni Zone”—you know—but I’ll take my energy while I have it and I’ll be awake while I am awake.)

(Update: I wrote this post and hours later I fell back into the struggle 😔x)

I’m tired of getting shunted from one specialty to another. Why can’t the rheumatologist just steer the ship? I’m already having an infection and I already have Behçet’s, which as y’all know, you know, hurts. Why go to this doctor for antibiotics for the biological from another doctor for the referral for another. We already have Behçet’s 😢

I’m feeling pretty discouraged and hoping someone here can share their experience.

I’ve tried both Colchicine and Otezla, but unfortunately the side effects from both were unbearable for me. I was really hoping one of them would finally help, especially with my recurring mouth ulcers.

Now I’m wondering what other options are out there. Has anyone been in a similar situation where they couldn’t tolerate these medications? What treatments, medications, or approaches helped you manage your mouth ulcers?

I’d really appreciate hearing from anyone who has gone through this, because right now I feel like I’m running out of options.

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.

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.

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!

😅😅😅🥲🥲🥲

[removed]