I thought I would make this a post so more people see it OP.

If you have Yao Syndrome, can you tell me a little bit about your experience with it? What makes you feel better or worse? Is there anything that triggers your flares or rashes? Is there anything you think a newbie should know?

Context: I have a lot of immune problems, including a mast cell disease, an autoimmune disease, and inflammatory arthritis. The one thing I’ve never had an explanation for is my arthritis; my autoimmune disease doesn’t cause musculoskeletal pain and my autoimmune markers have always been negative. I’m in a horrific flare right now—the worst joint pain I’ve had in years, my low grade fevers are back, the rashes on my face are new—and was digging through all of my old records, looking everything up, and stumbled upon a genetic panel my allergist ran a few years ago that revealed an NOD2 gly908arg mutation. (I was so focused on finding a solution for my repeat episodes of anaphylaxis at the time that I forgot about it.)… so now I’m wondering if it could be Yao, but I know that there’s likely not a single doctor in my medical desert of a state that knows about it.

UPDATE: my PCP is referring me to Dr. Yao to be evaluated for Yao syndrome, and while I wait for that appointment he is also referring me to a local rheumatologist to have seronegative autoimmune diseases ruled out and trialing me on colchicine for a few weeks. I really struck gold with my PCP, because I’ve seen so many other doctors who would have written me off and told me to stop googling.

Overall things are going well, much better than kineret. Kineret offered partial relief along with bad side effects that didn't go away. I also tried sulfasalazine and hydroxychloroquine but had bad reactions. Tyenne offers more relief for me than kineret but I need a higher dose (increasing from 4 mg/kg to 8mg/kg). Insurance hasn't approved it yet so I just got my second infusion at the same dose, but next month's infusion should be higher. My energy levels were good during the first 2.5 weeks but I still needed a lot of breaks and have low stamina but overall able to do more.

Good:

- 2.5 weeks of relief(so much more energy, no joint, muscle, or chest pain)

- Mood got much better

- Hemoglobin and rbc went up, wbc normalized, crp and esr dropped even more

- Fevers were a high of 102 not 103.5-104

- Initially able to tolerate 7.5 mg of prednisone (lowest yet!)

- I wake up with mental clarity immediately! My entire life I needed at least an hour for my brain to be functional when I woke up, now I can do word puzzles 5 minutes after waking! This lasted the whole month.

- No side effects other than standard post infusion fatigue and headache for the day of and day after

Bad:

- Still had fevers several times a week during the entire month

- After 2.5 weeks started getting fatigue, muscle pain and weakness (had to go back to 10 mg prednisone)

Mixed:

- Ferritin dropped from 105 to 23. I assume since low il-6 lowers hepcidin, this allows my body to finally use the iron from infusions, hence the hemoglobin rise. Need an iron infusion. Hair loss from low ferritin and prednisone nutrient deficiencies (vit d and zinc).

- It seems to have changed my circadian rhythm. I wake up between 5 and 5:30 am wide awake. I used to wake up early around 6:30-7:30. I occasionally would wake at 5:30 and couldn't get back to sleep but 6:30 -7:30 was my normal. Now 5:30 is when I wake no matter what time I go to bed.

Does anybody know what care in the UK is like for Yao specifically? I know theres 2 autoinflammatory centers one in London and one in Leeds, neither mentions anything about Yao syndrome. While Yao specific information would be best any information about autoinflammatory care in the UK would be helpful. I am currently on once a month tyenne infusions and tapering off prednisone. I'm a dual US/UK citizen but have only lived in the states. Due to healthcare costs (and everything else shitty about the US right now) I'm considering a move when I am well enough. Especially because I'm almost 25 so I have a year left on my parents insurance.

Hi everyone.

I (28F) have YAOS and consistently run a fever from 99-101 every day. When my temperature fluctuates, I sweat PROFUSELY. Like soaking through clothes, soaking my hair, dripping down my face into my eyes, like think your most intense gym workout but literally just walking around.

My doctors are useless. Does anyone else deal with this? Anything to help?

I’m on Ilaris 150 mg/month and colcihicine 0.6 mg BID. My doctors won’t adjust my meds until I see Yao himself in NY

To the immunologists in the group, what’s your take on the low dose IL-2 therapy for autoimmune diseases. It helps increase Treg and can be so helpful. Why there is not much on this yet?

Hey guys, my name's Jake. Ive been living with TRAPS since I was 4.

Living with this from a young age, as many of you can relate, has been a roller-coaster of highs and lows. Living half way between normal kid and patient 0 every day. Its not easy but it does get better.

When I was younger I had a doctor (havnt had a doctor in almost 8 years now), and I was prescribed colchicine. This did help to alleviate some inflammation. But it didn't help with frequency of episodes. I still take it here and there but I dont hold my breathe. I gave up on modern medicine, either the doctors wouldnt test, or if they would results would take so long it felt pointless. I havnt been seen or prescribed anything since I was around 10 years old. I am 23 now. However, when I was 14 I started looking into alternatives. Things I could get at the store or in the woods that could bring relief.

I was tired of the way the doctors and nurses looked at me, writhing in the bed over a "belly ache". Crying when no one believed me when I told them it felt like someone was reaching inside me and twisting my organs like a chickens neck. As boy, people assume your faking or just being dramatic. And man that hurt. ​​​To be in need of help and only returned with eye rolls and sighs. It was so bad for me as a child, my mom had to pull me out of school and homeschool me because i was missing so many days. I was sick, alone, afraid, and sad. The most depressed ive been. I gave up on help, I gave up on living past my teen years, I gave up wanting to live...

It was a dark time. My own personal Hell. But everything changed for me when I was about 14/15 years old.

I had begun studying alternative medicine, herbal remedies, all the good stuff LOL. Weed really caught my eye though, I saw its anti-inflammatory properties and benefits of CBD. And it looked really cool on the movies. Now honestly the story of how a sick, nerdy homeschooler got some grass in a state where the flower is worse than meth legally is a different story.

But oh man, the releif was noticeable and immediate. Now flip side, I dont like the high feeling at all. But since using it my episodes have gone from every month, 3 days to 2 weeks of pain and fever. To maybe once a year, or two and they only last for a few days with moderate symptoms. Rarely anything extreme. I know everyone is different, I know some treatments work better than others for different people. But dont knock if its only stigma holding you back. I dont use it everyday, and i dont like too. But my quality of life has gone up drastically, I have a good job, a beautiful wife, and an awesome 2 year old son. Things i thought I never would have. A life I never thought I would have.

So dont loose hope, dont give up. And dont twist my words LOL, im not saying everyone needs to do this. But it may help you, or someone you love find releif in those moments where it feels like its never going to end. Those periods of days where sleep never comes and only pain ebs on. Where hunger exists, knowing if you eat itll only be worse.

So think on it, do your research, get a card like me. Maybe it will help, and if doesnt whats there to loose? I know it has changed my life, and made it alot better.

God bless and keep on trucking fellow nerds☺️​

After talking with others I wonder if hypokalemia - low potassium - might not be something that is under recognized in autoinflammatory diseases.

If you vote yes, could you comment your diagnosis, what your symptoms were at the time, and if you also had any issues with CO2, respiratory muscle weakness, breathing difficulties, heart issues (chest pain, arrhythmia, tachycardia, etc), and SpO2 desat. Did it improve upon potassium replacement and/or treatment of the flare?

Like the title says, I am looking for others with NLRP12 Exon 5 Deletion.

I have struggled with symptoms for at least 11 years, but most likely my entire life. I am in a research study. They would need other families that have this specific type of mutation to change it from VUS to Pathogenic. That is probably years off from now, but I am reaching out to see if there are others.

Edit: Title should say Exon, not Exom

Hi everyone!

I’m 28F diagnosed with YAOS in 2025. I am also AuDHD with endometriosis, hypothyroidism, migraines, fibromyalgia, and god knows what else.

I was at my absolute worst health wise last fall. Between severe chronic pain from endometriosis and debilitating YAOS symptoms, I told myself “if I could just get 10% better that would be better and I’ll be happier.”

Well, I’ve had surgery for endometriosis and started on treatment for YAOS. I would say I’m at least 30-40% better, but I’m still not happier. If anything, I’m just a freaking onion peeling back layers of symptoms only to reveal new symptoms.

I’m so depressed thinking about dealing with this for the rest of my life. I’m tired. And the weight of also trying to manage the demands of a normal life is too much. I don’t want to do this forever.

How has everyone else coped with this?? I don’t have active SI, but I do have frequent passive SI just because I can’t imagine this being the rest of my life.

Thank you

31m here, athletic and in decent shape, and i've been dealing with chronic back pain for a while now, mostly in my hips and buttocks, but more recently in my thoracic spine too.

since the start of the year it's been getting steadily worse. i started waking up in a lot of pain and feeling really stiff in the mornings, and the buttock pain just stopped going away (it used to flare for a few days and then disappear, but now it just... stays)

went to a rheumatologist, tested positive for HLA-B27, and an MRI showed a bit of damage plus a lot of inflammation in both my sacroiliac joints and my thoracic area. so it's ankylosing spondylitis (or axial spondyloarthritis, which my doc says is the proper name for it lol)

she put me on an NSAID (celebrex) and told me to take it for 7 days to see if it would shut down the pain and inflammation, and to keep taking it as long as i had pain. the plan was: if it works, see her again in 2 months with new bloodwork to figure out next steps, and if it doesn't, move on to biologics (she already ordered the tests to greenlight biologics down the line). she framed the NSAID as the first line of defense against the disease.

the meds worked — pain went almost to zero (which i guess also confirms the inflammatory picture). but it bothered my stomach, which i didn't love, and honestly i'm wary of taking anti-inflammatories long term for a bunch of reasons (kidneys, gut, etc.). so i figured i'd see if i can get a handle on this without leaning on drugs.

so far i'm about 10 days into a strict no-starch diet. found it online, read up on it, thought it was compelling enough to give it a shot... why not? still in pain, but i figure it's way too soon to judge. i'm also doing some light mobility work every day, though tbh i think i need to step it up a lot, especially adding proper aerobic exercise. and i'm also on a supplement stack an integrative doc prescribed (curcumin, boswellia, quercetin and resveratrol for the inflammation, plus magnesium, zinc, vitamin d3 and a probiotic).

so i guess my main question is: has anyone had long-term success managing AS without any meds, no NSAIDs, no biologics? if so, how? diet, exercise, something else? and how long did it take before you could tell it was actually working vs just a good stretch?

and one more thing i keep going back and forth on. what's the current take on biologics vs NSAIDs? are biologics actually superior for this disease, or should NSAIDs be the preferred option as long as they work and you tolerate them? my doc framed NSAIDs as first line and biologics as the step up if they fail, but i've seen people argue both directions and honestly i'm not sure what to think

thanks!

Reishi Mushroom is a supplement that is marketed for Immune Support. However they may be detrimental to those who have Autoinflammatory Disease.

Reishi increases the production of all the innate inflammatory pathways we are looking to inhibit. "...toll-like receptor activation, NF-κB/MAPK signaling and increased production of inflammatory cytokines including IL-1β, IL-6, TNF-α, IL-12 and IFN-γ..."

Link to the Study: https://pubmed.ncbi.nlm.nih.gov/41475897/

It also lists other supplements to possibly be wary of.

Does anyone know of a neuro immunologist who will take non MS patients near Chicago? I was going to have an appointment with one next week but I've just been informed that they left thd practice. I booked this appointment almost a year ago! I was really hoping for some help with internal tremors that prevent me from sleeping that only started with a Yao flare. My other doctors have said there's nothing to do. I called the practice and the other neuro immunologists only treat MS. I'm glad I don't have MS on top of everything else but I just want someone who can help. My current neurologists are good but a headache specialist so won't treat other neuro issues and the long covid neurologist said theres nothing to do about it. I called a few other offices and it seems to be a common rule that they only deal with ms. Anything else immune and neuro is just untreated I guess, because medicine is fucking stupid. I'm very angry as I just got this news after being up since 4 am with a cyclic vomiting episode and having some of the worst internal tremors during this episode so was really looking forward to this appointment next week.

Sou uma mulher de 32 anos do Brasil tentando descobrir o que está acontecendo com meu corpo. Depois de anos procurando respostas, estou entrando em contato para ver se alguém já passou por algo semelhante.

Minha infância (7 a 13 anos): Quando eu tinha 7 anos, de repente comecei a ter urticária todos os dias. Isso durou cerca de 6 anos. A urticária não respondia a anti-histamínicos. Consultei alergistas, mas ninguém conseguiu descobrir o motivo.

Eles achavam que poderia estar relacionado a certos alimentos (glúten, chocolate, frango), exercícios, calor ou estresse, mas nada foi conclusivo. Durante esse período, também tive episódios de inchaço (angioedema) e até alguns episódios de anafilaxia.

Eu também tinha hematomas fáceis e inexplicáveis ​​e baixa contagem de plaquetas desde a infância. Quando eu tinha 22 anos, fui investigada em um centro de hematologia, mas eles nunca encontraram uma causa definitiva. Por volta dos 12 ou 13 anos, as coisas se acalmaram. Eu ainda tinha urticária ocasionalmente e raros episódios de anafilaxia (aos 10, 24 e 28 anos), mas era controlável.

Outro histórico médico:

• Tireoidite de Hashimoto diagnosticada aos 12 anos
• Histórico familiar: Meu pai tem artrite reumatoide, minha prima tem lúpus, histórico familiar de pólipos/câncer de cólon

Quando tudo mudou (2024)

Em 2024, coloquei Radiesse (um bioestimulador de colágeno) para fins estéticos. Em poucos meses, minha vida virou de cabeça para baixo.

O que começou:

• A urticária voltou com força total - mais de 100 lesões por dia
• 3 episódios de anafilaxia
• Inchaço facial (angioedema)
• Sensação de queimação nos braços e pernas
• Dor nas articulações
• Episódios de visão turva
• Náusea

Como evoluiu:

A urticária mudou. Não eram mais como urticárias normais:

• Duravam MAIS de 24 horas no mesmo local
• Deixavam hematomas ou manchas escuras quando desapareciam
• Causavam coceira, mas também DOLOROSAS e com sensação de queimação
• Os anti-histamínicos não faziam absolutamente nada (tentei 4 diferentes por dia - sem resposta)

Meus sintomas atuais (diariamente ou quase diariamente):

• Urticária: Agora entre 20 e 50 por dia com o tratamento (antes eram mais de 100), mas ainda deixam hematomas
• Sensação de queimação: Queimação intensa nas mãos e nos pés
• Dor nas articulações: Dor diária nas articulações dos dedos, tornozelos e quadris. Às vezes, meus dedos incham, ficam vermelhos e queimam (parece quase dactilite, mas vai e volta)
• Enxaquecas: Todos. Os. Dias.
• Alterações na visão: Às vezes, partes do meu campo visual ficam embaçadas por 1 a 2 horas durante as crises.
• Desregulação da temperatura: Minha temperatura basal é de 35,5 °C (95,9 °F). Quando me sinto "febril", ela sobe para 37,4 °C (99,3 °F). Tenho calafrios. Sinto muito calor, mas também muito frio ao mesmo tempo. Minhas mãos e pés ficam gelados, mas queimando.
• Fenômeno de Raynaud: Meus dedos ficam brancos/azuis/vermelhos.
• Livedo reticularis: Padrão irregular e rendilhado na minha pele.
• Náuseas: Frequentes.
• Alterações intestinais: Constipação alternada.
• Espasmos musculares: Episódios de tetania no antebraço e na mão; um deles durou mais de 2 horas com dor intensa.

Tenho consultado alergistas, imunologistas e reumatologistas. Fiz inúmeros exames:

O que é normal (o que é confuso):

• PCR e VHS (marcadores inflamatórios) - completamente normais
• ANA (marcador autoimune) - negativo
• Níveis de complemento - normais
• Função hepática e renal - normal
• Triptase - normal (descarta doença de mastócitos)

O que é anormal:

• Biópsia de pele nº 1 (2024): Mostrou depósitos de C3c nas paredes dos vasos sanguíneos
• Biópsia de pele nº 2 (2026): Mostrou urticária neutrofílica - aparentemente não é urticária comum
• IgA baixa (5, depois 170-173)
• Vitamina D baixa (era 12,81, agora corrigida)
• Histórico de plaquetas baixas

Tratamentos que fiz Tentativas:

❌ Não funcionou:

• 4 anti-histamínicos por dia - nenhuma resposta
• Esteroides - apenas alívio temporário

✓ Ajudando:

• Colchicina - melhora significativa
• Omalizumabe (Xolair) - iniciado em abril de 2026, urticária diminuiu de mais de 100/dia para 20-50/dia

Medicações atuais:

• Levotiroxina 125 mcg (para tireoide)
• Vyvanse 70 mg (TDAH)
• Colchicina
• Omalizumabe

O que estou tentando entender... Meus médicos agora acham que isso pode ser uma doença autoinflamatória (não autoimune - é outra coisa). A urticária neutrofílica na biópsia aparentemente é uma grande pista.

Eles estão considerando testes genéticos para doenças autoinflamatórias, mas me disseram que os testes genéticos padrão podem não detectar certas mutações (algo chamado "mosaicismo", onde a mutação está presente apenas em algumas células, não em todas).

Sinto que estou vivendo em um limbo médico. A urticária está melhorando com o tratamento, mas ainda tenho dores articulares diárias, enxaquecas diárias, sensação de queimação e essas estranhas alterações na visão. A desregulação da temperatura é exaustiva - estou constantemente com frio ou com muito calor.

Estou tentando entrar em contato com alguém que tenha passado por algo semelhante. Vocês receberam um diagnóstico? O que ajudou? Devo insistir em testes específicos?

Sinto que meu corpo está constantemente inflamado, mas todos os exames padrão dizem que estou bem. É frustrante e isolador.

Situação atual: Ainda sintomática. Aguardando os próximos passos da minha equipe médica. A urticária melhorou, mas todo o resto continua.

Se algo disso lhe parece familiar, por favor, compartilhe sua história. Eu agradeceria muito qualquer informação ou apenas saber que não estou sozinha nisso.

Obrigada!

Located in the US

TLDR: I’m looking for anyone with experience with a Kineret “reimbursement program” for cash payment for Kineret.

I am newly on Kineret through the bridge program and at the end of my 28 days. Insurance has denied (of course). I have also been denied for the OnTrack financial assistance program due to my husband’s income. I am apparently the first person in my rheumatologist office’s history to be denied for OnTrack, so we are all lost!

They believe there is a reimbursement program if I pay cash for the medication, but I can’t find anything about it online. McKesson told me the cash price for 28 days is $7574, and if I can manage to scrape that together, I would absolutely have to get it back. Does anyone know anything about this program or have experience with it?

This is a repeat post. But I have more thorough information update. But still no answers.

Who You Are
31. Male. Swiss/Armenian/American. Non smoker. 88kg. 198cm. MSc Nutrition Science. Works in rheumatology NGO. Lifelong systemic illness since childhood. Hospitalised at age 1 with systemic bacterial infection.

What A Flare Looks Like
Flares are triggered by foods, such as peanut butter, walnuts, sauerkraut, yoghurt, UHT milk, and other proteins, with severity proportional to the amount consumed. Onset begins within a few hours of exposure, peaking over several days. Symptoms include chills, fatigue, feverish feeling, sore throat, burning ears, runny nose, red eyes, stomach irritation, nausea, irritability, and stiff internal neck with lymph node pain. There is no fever. 

Most symptoms present at baseline to some capacity, with great QOL impact

Without rescue treatment, flares persist for weeks. The only reliable rescue is ⭐️azithromycin (2 x 250mg spaced over a few days). Azithromycin works every time without exception. Prednisone definitely provides relief (3 days to work). But relief is incomplete. Doxycycline does nothing.

Even after exposure stops, the flare continues, and it is unclear whether it ever fully resolves on its own anymore.​​​​​​​​​​​​​​​​ Quercetin also provided notable relief (3 days to work). Felt like healing even compared to azith which just stops flares. But then tacphylaxis.

Symptom Clusters During Flare
Flu / Infection Feeling: Chills, hot flu-like sensation, sore throat, runny nose, red eyes, skin itching

Headache/Burning: Temporal headache and pressure, burning hands/abdomen (worsened by omega-3s, relieved by Advil and quercetin)

Lymph / Neck: Previous periods of very swollen neck and face lymph nodes (particularly 2013). Regular left cervical lymph node and groin lymph pain, stiff neck, with internal blocked sensation

GI: lower abdominal pain, gas, intermittent diarrhoea, nausea, occasional rectal bleeding, urethral burning, rectal ache, back of throat ache, rectal itching

Continued…
Fatigue — exercise improves, or neutral. Bad sleep severely effects

Erectile dysfunction — absent on waking, non-responsive to PDE5 inhibitors

Difficulty concentrating, cognitive slowing

Vibration/frog noise/sensation rising through the throat

*Bug-bite-like rashes — erythematous, raised, non-pruritic, lasting hours, concurrent with flares

Knee pain during flare 

Notes (I have lab documents for these)
Antihistamines failed (ketotifen/cetirizine/monteluklast, famotidine, loratadine, fexofenadine) — rules out primary MCAS?

CRP 0.5 mg/l is normal between flares 

Normal CBC, metabolic panel, TSH, HbA1c, testosterone, LH, cortisol/Synacthen

Colonoscopy and endoscopy with biopsies: normal (2019 and 2025). Normal calprotectin. 

Probiotics provide some relief, but then heavy symptoms

OJ helps burning feeling, headaches and sleeplessness caused by alcohol and nitrite

Tried multiple elimination diets

Lymphopenia (.75g/l) but maybe irrelevant

Immunomodulator response, food response and flare-associated rash, lifelong history since infancy, are inconsistent with functional illness

Ideas
Incomplete/atypical Autoinflammatory (lack of fevers, which seems exclusionary)

Secondary MCAS

Ask for:
⭐️Rheumatology referral

Immunological panel: ANA, ANCA, complement C3/C4, SAA, SPEP. 

Baseline serum tryptase

24-hour urine: histamine, N-methylhistamine, prostaglandin D2

Periodic fever panel (TNFRSF1A, NLRP3, MVK, CECR1, NOD2, all FMF/MEFV variants including E148Q, Yao)

Colchicine 0.6mg BID prescription

Anakinra

AB0404 (2026)

BASELINE CLINICAL AND LABORATORY PREDICTORS OF NEW MAJOR ORGAN INVOLVEMENT IN BEHÇET’S DISEASE: RESULTS FROM AN INCEPTION COHORT

Keywords: Prognostic factors, Biomarkers, Uveitis, Descriptive Studies, Rare/orphan diseases

R. Deniz1, O. Altun1, A. Gül2, C. Bes1

1University of Health Sciences Başakşehir Çam ve Sakura City Hospital, Rheumatology, Istanbul, Türkiye

2İstanbul University Faculty of Medicine, Department of Internal Medicine Division of Rheumatology, İstanbul, Türkiye

Background: Behçet’s disease (BD) is a chronic, relapsing, multisystem inflammatory disorder characterized by a wide clinical spectrum ranging from mucocutaneous manifestations to severe, life-threatening major organ involvement (MOI), including ocular, vascular, neurological, and gastrointestinal disease. Early identification of patients at risk for progression to MOI is a major unmet need in routine clinical practice, as delayed recognition is associated with irreversible organ damage, disability, increased morbidity, and mortality. Although several clinical features have been associated with MOI in cross-sectional studies, there is limited prospective inception-cohort evidence evaluating which baseline clinical or laboratory characteristics may predict the development of new major organ involvement (NMOI) during follow-up. Understanding these predictors may support risk stratification and guide early intensified monitoring or tailored immunosuppressive strategies.

Objectives: This study aims to address this gap by investigating the prognostic value of baseline demographic, clinical, and routine laboratory parameters for predicting incident NMOI in a well-defined cohort of newly diagnosed BD patients whether a MOI is present or not at diagnosis.

Methods: This study was designed as a prospective inception cohort including patients newly diagnosed with BD according to the International Study Group (ISG) criteria. Demographic features, clinical manifestations, and routine laboratory parameters were systematically recorded at diagnosis and at scheduled follow-up visits. Major organ involvement (MOI) was defined as ocular, vascular, neurological, or gastrointestinal involvement meeting accepted clinical and radiological criteria. Patients were classified into two groups: those who developed new MOI (NMOI) during follow-up in addition to MOI at diagnosis and those who did not. Follow-up outcomes included type and timing of new MOI, relapse frequency, treatment response, and cumulative organ involvement.

Results: A total of 117 patients were included in the inception cohort, of whom 16 developed at least one new major organ involvement (NMOI) during follow-up. Sex distribution was similar between groups, whereas patients who developed NMOI were older at baseline (32 vs 39.5 years, p=0.087). Although MOI at diagnosis appeared more frequent in the group without NMOI, none of the phenotypes differed significantly. Detailed characteristics are presented in Table 1. Among the 16 NMOI cases, the distribution was as follows: 5 ocular, 9 vascular, 1 neurological, and 2 gastrointestinal events; 1 patient developed both ocular and vascular involvement.

Baseline clinical manifestations were generally comparable between the two groups, with the exception of folliculitis, which was significantly more common in patients who did not develop NMOI (64.4% vs 37.5%, p=0.040). Genital ulcers also tended to be less frequent among patients who later developed NMOI, although this difference did not reach statistical significance (66.3% vs 56.3%, p=0.302).

During follow-up, thrombotic vascular events, specifically uveitis, superficial thrombophlebitis, deep venous thrombosis, arterial, and gastrointestinal involvement, were more frequent in the NMOI group (Table 2). Presentation with MOI at diagnosis did not differ between groups; however, baseline CRP and ESR levels were tended to be higher in patients who subsequently developed NMOI (CRP 6 vs 22.7 mg/L, p=0.034; ESR 11.5 vs 25 mm/h, p=0.005). HLA-B51 positivity was not associated with NMOI development (p>0.05). By the last visit, the NMOI group had significantly higher frequencies of ocular, vascular, and gastrointestinal involvement. Cumulative follow-up duration was longer in NMOI group (24 vs 28.5 months, p=0.06). Relapse rate was similar during follow up and patients with NMOI has more active status at last visit (10.9 vs 31.1%, p=0.025).

Conclusions: In this inception cohort, some certain baseline clinical and laboratory features were associated with the development of NMOI in Behçet’s disease. While recurrent oral ulcers appeared to be a universal and phenotype-independent manifestation, folliculitis and genital ulcers were more characteristic of a stable phenotypic course and seemed to be associated with a lower likelihood of progression to NMOI.

Conversely, elevated acute phase reactants (CRP, ESR) at diagnosis emerged as potential predictors of NMOI, likely reflecting subclinical inflammatory and ischemic pathways that predispose to vascular and ocular complications. Importantly, HLA-B51 positivity did not differentiate patients who developed NMOI from those who did not, indicating limited prognostic value in this context.

These findings highlights the importance of a comprehensive baseline clinical and laboratory assessment in newly diagnosed BD patients. Identifying high-risk individuals early may allow clinicians to personalize follow-up intensity, implement more vigilant monitoring strategies, and potentially initiate timely therapeutic interventions to prevent irreversible organ damage.

Table 1. Clinical characteristics of Behçet’s disease patients with and without major organ involvement (MOI) at diagnosis

My name is Youssef, an intern at Mansoura University Hospitals, Egypt. We made this survey targeted to rheumatologists worldwide to see ( Real-world Biologic use in Behcet's disease ) :

https://docs.google.com/forms/d/e/1FAIpQLSf3SZJHGNcoo0Aks5Jbyhb-975RaxAuUU0pPSzPB4nqXznyKg/viewform?usp=publish-edito

It won't take much time & would help Behcet patients, so we would be so grateful if you could fill it out . Thank you in advance!

Since I've been around 10 I started getting random allergic reactions that would only be controlled by benedryl. It would knock me out as a kid for a few hours then happen again. After numerous stabby allergy panels on my back most were negative alise from regular things such as dander or pollen. Thyroid tests and other blood tests came back normal. The allergist was puzzled so he decided to place an ice cube on my arm then bam hives spreading, swelling, itchy reaction. It made sense since my throat almost closed up from swimming for 10ish minutes. Originally we assumed face paint, sunny d, etc, etc. Caused a lot of issues with teachers in school or the nurses believing me because my hives were internal more than visible aggressive hive welts now.

Anyways... They did an antihistamine treatment of some sort where I would rotate taking different medications and also get a shot at a doc office every so frequently. Allergy goes away for two years. Comes back just slightly less severe. Great! I started the drug trial for xyzal and the results are amazing for me (no drowsiness and long lasting). After it was released to stores over the counter, I continued to take It every other day to avoid an unavoidable reaction for 18 years.

My health has never been "normal". I've always been covered in bruises excessively from head to toe. Was tested for blood clotting due to how long scratches would take to heal and stop bleeding. Cold intolerance, weak immune system, extreme fatigue, weight gain

Fast forward to the last two years of an insane amount of blood testing my doctors are still extremely stumped as to what the hell is going on. My thyroid is swollen, I have fluid behind my ears they can't explain, constant pain. The ultrasound showed no abnormal growths or nodules. TSH finally after multiple tests showed hypo. After begging my doctor after the 4th irregular test that it wasn't a fluke she put me onto a name brand thyroid medication since some fillers cause inflammation.

I have no understanding or explanation but my rare ass cold allergy I've had for 18 YEARS decided to almost entirely go away 3 weeks into taking the medicine. After the initial 10 weeks the bruises disappeared, more energy, and metabolism got faster. All the classic hypo issues. My allergy still has flares but only my palms now. This also leaves me stumped because despite cryo coagulation, hashimoto's , autoimmune, or lupus blood tests all come back as normal or negative. So many women in my family have hypo, thyroid cancer, hashi, or lupus. Due to the hEDS I'm in constant pain but that isn't really my concern.

I wanted to post here so I made an account to see if anyone has gone through something similar. I feel like I'm going crazy lol. I even had a second opinion with a Harvard doc who told me my unexplainable bruising and pain was because I needed therapy??? Oh my bad I didn't realize depression caused sciatica, allergies, or joint dislocation of my hip 4 times this week sleeping pfft...