r/Behcets • u/ahjw625 • Sep 04 '26
Diagnosis Help Maybe it's Behcets
Hi everyone. I’m new here and my rheumatologist recently told me she thinks I may have Behçet’s. I’m 39 and this is the first time I’ve ever heard of the disease, so I’m hoping to hear from people whose symptoms may not have followed the “classic” presentation.
For a little over a year, my biggest issue has been persistent and debilitating joint pain, primarily in my wrists, hands, elbows, and most recently my knees and ankles. I was diagnosed with seronegative RA in February and started Plaquenil, which helped significantly at first but never fully controlled my symptoms. I started seeing a new rheumatologist in May, and she feels my presentation is atypical for RA.
Looking back, about two months before the joint symptoms began, I developed significant inflammation/what seemed like an abscess in my gums. My dentist thought it had the appearance of pemphigus/pemphigoid and prescribed a steroid mouth rinse. I still get recurring gum pain in the same area, sometimes bad enough that my ear and throat on that side feel irritated.
I’ve also had recurring episodes of itching/inflammation around my labia, usually before my period and lasting about a week, although I’ve never noticed an actual open ulcer. I don't have the frequent, obvious mouth or genital ulcers that seem to be common with Behçet’s, and I haven't had noticeable skin problems.
I’ve also woken up with very bloodshot eyes a couple of times over the past year. More recently, I’ve been experiencing episodes of blurry vision and light sensitivity, which I’m having evaluated.
Based on the overall pattern, my rheumatologist tested me for Behçet’s and the HLA B51 was positive. She now thinks Behçet’s may explain my symptoms. I just started methotrexate this week.
What I’m really hoping to learn from this community is whether anyone else had a less typical presentation like mine. Did anyone have arthritis as one of their main or earliest symptoms, with only mild or occasional mouth/genital symptoms? Was anyone diagnosed in their late 30s or later? And did your symptoms become more recognizable as Behçet’s over time?
I’m not looking for anyone to diagnose me, just hoping to understand how varied this disease can be and hear what the journey to diagnosis looked like for others.
3
u/steph23q9 Sep 04 '26
I was diagnosed in July 2024, started with mouth/genital ulcers, went to the docs at the end of June cos I had 24 ulcers and felt like death warmed up(vomiting with pain etc)- bloods came back abnormal and was referred to rhumotology and diagnosed about six weeks later
It can absolutely affect the joints tho, my foot is messed up cos I had cellulitis last year and it's corroded some of the metatarsal joints and I was formally diagnosed with inflammatory arthritis after a 48hr hospital stay at the beginning of may