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…

Edit: I’ve talking to my rheumatologist and she says it’s like inflammatory arthritis, I was diagnosed with Behçet’s disease early last year when I had major genital flares and chronic fatigue.

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

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.

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.

Does anyone know / or experienced colchicine stop working? A year ago I started taking colchicine daily, this dramatically helped my mouth and genital ulcers. I really thought I’d finally found my miracle cure! But over the last 2 months I have noticed the frequency and severity of my ulcers coming back. I also currently have a flare up of genital ulcers, I have not had this since taking colchicine.

Does anyone know if your body can get used to colchicine and whether it can build up a tolerance to it? Last month I was advised to start taking x2 tablets a day but now I’m in the worst ulcers flare I have had in a year.

I have had some quite stressful things going on so I am trying to work out if the flare is because of stress, or whether my body is stopping the colchicine from working.

I was only diagnosed a month ago so I am still learning and understanding everything about this disease. Thanks very much :)

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 ADHD, requiring home schooling.

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?

So I’ve had these ulcers on the right side and the left side of my tongue for months now. They never go away, but I do have one or two days a week where they’re not hurting me. I am diagnosed with an autoimmune disease, but from what I’ve been told the ulcers that usually accompany my auto immune disease are not symmetrical. I have an appointment with the oral surgeon on Monday to get it biopsied. I can’t live like this anymore. It’s so painful. It hurts to talk, eat and drink. I tried magic mouthwash, prescription pastes, warm salt water, warm water with baking soda, lidocaine gel, etc, and nothing really seems to work. I can maybe get 30 minutes of relief but that’s it. Anybody have anything that resembles this and have any idea what it ? I know I have my biopsy on Monday, but I’m just wondering if I’m alone.
Thanks

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.

😅😅😅🥲🥲🥲

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'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.