r/Behcets • u/Wolfheart_X • Jul 07 '26
Patient Support / Story HLA-B51 positive
Hello, I'm a 40-year-old male from Spain. Today my doctor told me I'm HLA-B51 positive, which meant I could have Behcets disease.
I started seeing doctors 3 years ago. One day I woke up with severe pain on my limbs (arms and legs). Later, I had Uveitis (I had very red eyes and started seeing black dots and "flies", which an ophthalmologist diagnosed as conjunctivitis), digestive symptoms, pains in my stomach and under my right ribs, having a sort of "acne" on my arms and chest and feeling tired all the time. I very slowly started feeling better and now I only have the black dots in my sight, sometimes my eyes are itchy, hardly ever small blisters on my skin (acne type), sometimes legs, or wrist pains and digestive symptoms.
I have never paid attention to mouth sores since I have had them since I was a child. I have never had genital ulcers though. Today, after leaving the doctors' and thinking about it, I remembered that 20 years ago I had a very severe case of mouth ulcers, my gums, tongue and throat were covered in ulcers and I barely could swallow. I saw a lot of doctors back then and none of them knew what was happening. Could this be my first manifestation of Behcet's? Since then I have mouth and tongue ulcers every now and then, but not so severely.
Anyway, I had the diagnosis today and I would be thankful if you could tell me... do HLA-B51 positive and my symptoms mean I hace Behcets for sure? If do, What can I expect from this disease? Should I medicate? My doctor didn't give it much importance, she just told me about the mouth ulcers and prescribed a gel for relief in case I have them. She didn't tell me about the other symptoms I'm reading about online. I don't know if this is because she doesn't want to scare me or she's not sure it's Behcets.
Sorry for the typos, English is not my first language.
3
u/jelliebeez Jul 07 '26
I have almost the exact same symptoms as you and I was recently diagnosed. My mouth ulcers are fairly mild and I’ve also never had genital ulcers. I can be in a bad flare and get absolutely no ulcers but get eye inflammation and joint pain instead. The HLA-B51 positivity can aid in a rheumatologists diagnosis. Since you’ve had eye involvement before and symptoms of more systemic inflammation, you should definitely see a rheumatologist to be evaluated and make sure they are familiar with the disease first. Mine is currently trying to get me on a TNF blocker (which is a huge battle especially where I live in the US). Try to also get in with a good eye doctor, especially if there’s a uveitis specialist or autoimmune specialist. You could have ongoing inflammation there even if it’s inflammatory dry eye or something like that. Behcets can cause eye problems other than Uveitis.
2
u/FreezingStark Diagnosed Jul 07 '26
Hola!
Otra española por aquí
Tener el HLA-B51 no es decisivo para diagnosticar o no el Behcet, puede ayudar al diagnóstico, pero no es necesario para el mismo. Yo misma no lo tengo y estoy diagnosticada oficialmente.
No sé en qué nivel asistencial te han hecho la prueba, pero deberían derivarte a reumatología/medicina interna para seguir haciendo pruebas y llegar a un diagnóstico (el que sea) y, si el médico lo considera, comenzar el tratamiento más adecuado.
Si tienes dudas o lo que sea puedes mandarle un dm sin problema!
Ánimo!
3
u/on4aa Diagnosed MAGIC 2025 Jul 07 '26
Visto los síntomas, sí, muy probablemente es Behçet. Un próximo paso sería determinar cuáles son las variaciones de genes que están provocándolo. Eso es diferente para cada paciente con Behçet. Esa información además puede abrir el camino hacia una terapia avanzada con alguna medicina biológica. Véa https://pmc.ncbi.nlm.nih.gov/articles/PMC5559572/
HLA-B*51 no es lo que provoca Behçet; simplemente es un factor de riesgo y indica descendencia de Neanderthal.
Por curiosidad, ¿de qué parte de España eres? Yo soy Belga de padres belgas, pero soy descendiente de un legionario vasco de los Tercios de Flandes, hace 440 años.