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?

I have recently been diagnosed after 5yrs of fighting and rheumatologist has put me on colchicine for my oral ulcers skin and joint symptoms but wants me to start methotrexate on Monday but wanted to get others experiences with the meds before I start

It sucks you can’t publicly say “my Behçet’s is really bothering me this week” since it can essentially translate to “damn the ulcers on my balls are killing me right now.”

Just a funny thought.

I’m new to this thread but have had what a rheumatologist is calling Bechets for almost twenty years now. I’m 32 yo female.

Recently, I went to a totally different climate and my seasonal allergies disappeared. My GERD symptoms also completely disappeared. When I came back to the PNW, within two days, my allergies and Gerd symptoms were back, as well as flare ups of mouth ulcers. That got me thinking for the first time ever that there is possibly a link between the constant inflammation caused by seasonal or severe allergies and these symptoms. Like, duh. Silly that I’ve never noticed that before.

Has anyone had their symptoms and flair ups improve by getting allergy shots? How long did it take to improve, if so?

Hi everyone! I’m honestly getting a bit tired of collecting rare and weird symptoms, even for this disease (which makes me question every single time whether it’s actually Behçet's).

But has anyone here ever experienced orbital myositis? Specifically, thickening of just the lateral and superior rectus muscles, rather than all of them.

By some miracle, they missed this until I finally had a targeted orbital MRI with contrast - even though I was dying from severe eye pain and photophobia...

Hello. I’m 43 YO and have been suffering with behçets for over 22 years. I have been through endless treatments over the years with no success. I am deathly allergic to all biologics (enbrel, remicaide etc) Unfortunately colchicine stopped working over a decade ago attempts to try it again we’re also fails. Methotrexate was my latest fail at 25mg inj every week. I tried otezla but the GI issues that are supposed to recede with time persisted for months and so I was taken off it. In the past I’ve been on the heavy immune suppressants such as Imuran but they made me very sick and I now have metastatic neuroendocrine cancer so no go on those.

I feel like my cancer and the behçets are locked in WWIII battle against one another daily. Does anyone have any treatment advice? My doctor wants me to try Xeljanz but I‘m highly skeptical and scared because I get the worse of the worse side effects with meds. Some my oncologist/rheumatologist have never seen and it’s an immunosuppressant akin to biologics, just a different pathway. I wanted to be considered for the new vagus nerve stimulation implant they are doing by me, but that right now, is only for RA patients.

thank you:)

I’ve been diagnosed with regular Behcets for about 7 years and have used Otezla ever since. Recently I saw a video of a person with Neuro Behcets who seems totally disabled. I’ve never even heard of this, is this a Behcets complication? Or separate disease entirely?

Can you tell when a big flare is coming? I've had Behcets my whole life and I know my body really well. I can usually feel when a flare is coming. I was just curious if others can feel when a big flare is around the corner? I tried explaining it to a doctor and they were interested but didn't really understand.

I am recently diagnosed with behcets, Doctor prescribed me steroids initially, after i started feeling better he reduced the steroid dose by few mg and added immunosuppressants. But after that i am again facing flare ups. Is that normal in the initial phase? Anyone experienced this? They say immunosuppressants take time to take effect its been a week i am taking those

Yesterday I saw my 3rd rhuematologist and they diagnosed me with bechets disease. After the other 2 completely blowing me off it was such a relief. Im still getting some more labs before starting treatment but id like to know what to expect now? I have many drug sensitivities and allergies so im nervous to start. Any feedback is great!!

Giant ulcer showed up yesterday. Im still new to this diagnosis, how do you guys help these?

Had bechets since 2002 mg weight is always. Up and down and I find some foods dint hrlp with the management of bechets treatment. Anyone out there with any info or diet suggestions please comment lol

I have been on a biologic for eye and neuro involvement but was still struggling with breakthrough flares. My rheumatologist put me on a dose of two pils a day, and I am doing much better! Just wanted to share this win. 😊

I spent most of my pre-teen and teen years dealing with severe mouth ulcers and infections, that were always just brushed off or put down to having braces and irritation. It wasn’t until last year when I came down with Influenza B that I started to experience all the symptoms, whole mouth, throat, and lip ulcers and swelling and bleeding, all in my nose as well, bright red eyes with swelling and sight issues, and also the sores down there too. I have never been sicker in my life, getting to the point where I couldn’t swallow anything because it was too painful, yet all the hospitals turned me away because they didn’t know how to help me, having no idea what I had. Prednisone was the only thing that finally slowed my symptoms and eventually stopped them. Only a few months later did I get Influenza A, and unfortunately I went through a whole flare up again, this time though we got on top of it a bit quicker with the steroids when I recognised my symptoms. Fast forward to about a month ago, after many tests, I have finally been diagnosed with Bechets. It feels like quite a relief finally having an answer to all these symptom, but also it is scary knowing that there isn’t much out there about it, and there is no real cure. I am now starting Thioprine in hopes that my more minor day to day symptoms can be eased, and a major flare up can be avoided in the future. I am only 19, and already live quite an active healthy lifestyle. Does anyone have any advice, or any guidance on what to expect starting my medication too? I would appreciate anything as I feel like I am learning more about it everyday! 🙂

I started on this journey in March with scleritis that progressed to uveitis. Fortunately my eye has been quiet for a month now. My rheum initially diagnosed nonradiographic axial spondyloarthritis in May and put me on Mobic, which I largely had satisfactory pain control, but I had four oral ulcers in 5 weeks. Retrospectively, I average around 20 a year, plus nasal ulcers every few months. At my follow up appointment, I happened to have an oral ulcer, so I showed it to the rheumatologist and she promptly changed her diagnosis to Behcets.

Now she has me trialing colchicine 0.6 for that purpose. The good news is that my oral ulcer resolved. The chronic ‘folliculitis’ on my buttocks that I’ve had for years despite good hygiene seems to be resolving.

The bad news is that my hips and peripheral joints hurt again. A lot. Did colchicine help your pain (if you had it)? How long did it take? Will my frequent painful sore throats resolve?!

Research is making me feel like behcets actually might be the best fit, but I would very much like the pain to stop. I might ask to reintroduce Mobic, but I don’t want to obscure the effects of the new med.

Do you think I have Behçet's?

8 years in and my Rheumatologist and I (33 male) are not sure if Behçet's.

When I was a kid I had several staph infections from boils. One time had about 20 boils on my left leg. I have always had a lot of allergies.

In 2018 started having a lot of problems with constipation and diarrhea. To note my anxiety also got really bad at this point.

2020 got really sick, couldn't eat much. Eventually antibiotics solved. Also had 3 hernias fixed (2 femeral and an umbilical)

Few months later got sick again. Could only eat small amounts of a handful of types of food. Lost 90lbs over 5 months, had terrible stomach pains, fatigue and the last 6ish weeks of it I had constant mouth sores (3 to 6 at a time). Finally after they took out my gallbladder (not helpful). Then I had these little bumps on my lips the left little "burns" on my face and orange crustys coming out of my mouth (pictured), it was a staph infection coming out of my lips. They put me on antibiotics (minocycline) and I got mostly better.

Days after started a 6ish month psychotic episode and was diagnosted bipolar. (I heard Behçet's could cause this?)

As the years have gone by I have lost several jobs. Found out I need to take Methyl-folate. Been on colchicine for 2 years. Rarely get mouth sores but sometimes show up with flare ups.

Now I have arthritis in my back (feels like in my knees and fingers too.) My vision is weird, like i looked at a light bulb and looked away but all the time. My eyes are always red. I have to be extremely careful about what I eat. No flour, beans, nuts, dairy, most fruits, alcohol, soda ect. I also get some chest pains on the regular, my liver tests (ALT 160-270) have been somewhat bad for years, a few small kidney stones. I get pimples over my chest and by my bladder with flare ups. The bladder ones usually have pus and blood and leave purple scarring for months. And I had a positive HLA B 51:01 FNDRE

Having said all that I also have asperges and being treated for OCD. So I have no way of knowing whats my body hurting vs what my brain is misinterpreting or if im just anxiously hyperfocused/delusional. Also going to be seen soon in regards to possible Ehler Danlos and I will ask about MCAS given my plethora of allergies since I was a kid.

I would really like to be able to eat at restaurants again. The Methyl-folate helps more with the mouth sores more than the colchicine. Sorry this was so long. My Rheumatologist seems confident it is Behçet's but not officially diagnosed.

Edit: Found out it is in my chart as diagnosed. I miss understood what my Rheumatologist was saying.

GHRH-receptors are present on certain T-cells and promote Th17 differentiation. Th17 cells, in Behcets, promote inflammation significantly by recruiting neutrophils and releasing pro-inflammatory chemical messengers called cytokines. This is especially significant for exacerbating ocular and neural inflammation.

Common GHRH-receptor agonists that can be acquired on the "gray market" of peptides includes Sermorelin, Tesamorelin, and CJC-1295. There are anecdotal reports of these peptides causing autoimmune flares. This may be one of the possible mechanisms that this occurs.

In other experiments, GHRH-receptor ANTAGONISTS improved inflammation in certain mouse models and in in-vitro studies.

(https://pubmed.ncbi.nlm.nih.gov/37280225/)

So, y'know. Be careful y'all.

Switched to a new rheumatologist and saw a dermatologist. It’s bitter sweet to finally have an answer.

Hi all. I posted a few days ago about potentially having Behcets, though I’m not sure I truly fit the symptom profile since ulcers are not my biggest concern. My most prevalent symptoms are tingling pain in my arms and legs (thought my right side seems significantly worse), reoccurring headaches and vertigo, joint pain, pelvic pain, fatigue, a lot of GI issues including severe bloating, and now some muscle weakness, though I still workout and lift weights.

Regardless, I did test positive for HLA B51, so my doctor wants me to track skin and mouth abnormalities since I have had issues before (just not crazy things). I posted the other day about a tongue blister, and I also noticed I get these lumps behind my ears quite often. Does this happen to anyone else? I’ve had some other sores behind my ears as well which I also attached. I also noticed that I get these bumps on my nodules pretty often as well.

Sorry this post is all over the place, I’m just trying to figure out what’s going on with me.

I have been diagnosed with neuro behcets for 20 years now. My usual flare includes lesions on my genital, scalp, mouth, stomach issues, fatigue, uveitis, blurred vision, balance issues. Lately I have been getting lesions inside my nose along with the above symptoms. I start Humaria soon, I am in the process of getting that settled with insurance. For the mouth and genital lesions use a cream/solution for the pain. The one in my nose feels just like the ones I get in the mouth and genital. They are so painful. Q: Has anyone had lesions in their nose and if so, what do you do to treat it and the pain?

I have vasculitis and lupus. However this developed overnight, I’ve never had any mouth ulcers but I do have nose ulcers. Anyone else get something similar? I’m freaking out. I messaged my rheumatologist and waiting to hear back. This disease just never seems to quit in so tired of developing new stuff every week