Communauté La maladie de Behçet

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how many doctors does a Behcets patient need

Please HELP
So far I have a Rheumatologist, Gastroenterologist, Internal Medicine; my primary care physician, Opthamologist

Same doctors I use. Occasionally I'll use a dermatologist and a urologist. Some people will use a neurologist if they develop neuro-BD.

primary,gi,urologist,nephrologist,rhuemy,neurowitt,cardiology,mental health, opthomologist-so I have 9.

Anxiety and Depression

Hello everyone,
I wanted to see if anyone else seems to cycle with episodes of depression and anxiety. I currently stopped taking all Behcets related medal accept those that stop my menstrual cycle because my doc said I'll have to do that till menopause. Anyway I stopped all meds because I'm a Kindergarten teacher and I was sick ALL the time. Little kids are germy and I was tired of getting sick. I love my job so I won't let my illness take that from me. I've started working out with a trainer and about to start acupuncture. I'm going as natural as possible. I have noticed though that my anxiety especially has been really bad. I just got my dream job for September so I would think that I would mentally feel better. I'm having a lot of trouble sleeping as I'm wired all night long. Occasionally some depression creeps in and I don't feel like doing anything. Anyone have these symptoms? I know my doc said Behçhets can cause them but I don't know how to ease them. Any natural suggestions?

Hi unfortunately my state hasn't made it legal yet and I could lose my job until it's made legal. :( thanks for the advice though and good luck with everything!

Good luck to you too. I knew there might be an issue because of your profession. Hope you can find something that works or maybe another member will share their advice!

I also suffer from extreme anxiety from this.


Meeting of European Behcet Patients in London 11th and 12th September 2015

Patients Invitation to attend a London conference in September 2015 to discuss Behcets with other European patients and Behcets Clinicians.

About 10 Bursaries are available to assist with travel and accommodation for patients to attend this important conference to discuss the formation of a European Network for Behcets, the Behcets Patient Conference in Italy 2016 and the ongoing work of Behcets International.

Please apply in the first instance by email sending your details as soon as possible

Clinical Lead: Prof Farida Fortune
Patients Lead: Behcets International (UK Registered Charity)

When: September 11th and 12th 2015
Where: The British Association of Dermatologists, Willan House, 4, Fitzroy Square, London W1T 5HQ

Why Do We Need European Reference Networks?

It can be a challenge to provide highly specialised treatment or care for patients who have complex conditions. This is especially true when the prevalence of such conditions is low, as is the case for rare diseases. The challenge is due to both the scarcity of expertise and to the scattering of small patient populations across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed.
Collaboration between EU Member States can support the pooling of expertise and help to ensure that knowledge is shared between healthcare professionals across borders. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.

What Is a European Reference Network?

European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders. A centre of expertise could be a clinical team, a medical centre or a hospital and must be formally accredited by its Member State.

Member States remain primarily responsible for the organisation and delivery of their healthcare; national participation in ERNs is therefore voluntary. When a healthcare centre does not have the required level of expertise to be part of an ERN as a centre of expertise it can participate as an associated or collaborative centre.

Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERNs that is being established can bring real added value to rare disease patients; ERNs aim to provide healthcare professionals with access to expertise that they may not be able to access in their country.
If no centre of expertise exists for a specific disease in their country, patients can still benefit from the knowledge that their doctor can get from centres of expertise in other countries. ERNs provide the structure that facilitates a doctor's ability to access such knowledge across borders.

Behçet’s International
Registered UK Charity No 1160795

Hey everybody, why only european patients are invited. thanks.


Hi Amine

At the present time the EU Countries are trying to set up Networks for a variety of rare diseases and so we are starting by inviting patients who come from these EU countries to visit London to learn more about this opportunity. We have limited funds to help about 10 people to come to the UK.

Next year there will be an International behcet Patients Conference in Italy and perhaps you could travel there to meet up with other behcets patients.

I am sorry that we cannot invite you on this occasion.



Hi Richard,

Thanks so much to all the people involved in this proyect and the effort you're doing !!!!
Hope one of us may be there (not me, I have some problems with the date).
I'm sure it'll be a great and super interesting meeting. No doubt about it.

Warm regards.


Behçet's Disease Spanish Association

La maladie de Behçet et les intolérances alimentaires

Ayant la maladie de Behçet depuis plus de 20 ans, je me suis rendu compte que certains aliments 'bons pour la santé', de la famille des baies et des noix, ou la menthe et l'alcool, déclenchaient de façon prévisible des réactions.

Il y a 10 ans, j'ai réalisé une enquête (je suis dentiste), demandant aux malades atteints de la maladie de Behçet, ce qui déclenchait leurs réactions, et beaucoup ont cité les noix mais je ne l'ai pas cru. Je mangeais alors beaucoup de pistaches, mais maintenant, je ne peux plus en manger, ayant peut-être développé une intolérance.

Mais il ne s'agit pas d'allergie habituelle qui se manifeste sous quelques heures, celle-ci se manifeste après un ou deux jours lorsque des lésions cutanées, de l'érythème noueux et des ulcérations aphteuses de la bouche apparaissent. Cela pourrait être lié à l'IgG parce que c'est une allergie à retardement, contrairement à une allergie immédiate, bien que ce mécanisme soit controversé.

J'ai fait des tests sanguins d'allergies alimentaires dont les résultats étaient complètement erronés, et d'autres scientifiques m'ont dit que ces tests non administrés sous contrôle médical n'étaient pas prouvés scientifiquement.

D'autres personnes atteintes de la maladie de Behçet ont-elle noté des réactions à certains aliments, combien de temps après avoir mangé se produisent-elles et à quels aliments ?

Merci beaucoup.

Note: Ce contenu a été traduit automatiquement par un service tiers.

Yes, the irritation is different, but I find that sometimes it almost seems to lead to an ulcer, so I still try to be cautious

The dr. at Syracuse a rheumy said it has something to do with the phosphorus in certain foods.I have a list they gave me I will list list-biscuits-nuts-mac&cheese -cheese-pizza-cola-chocolate-cream soups-peanut butter-milk-ice cream-pancakes-pork&beans-hot dogs& sausages-dried beans and peas yogurt&pudding-liver & organ meats-cottage cheese-almonds-cashews-coconut-pecans-walnuts-peanuts-pumpkin seeds-sunflower seeds-bran-bran flakes-bran muffins-oatmeal-whole wheat-wheat germ-raisin bran-sot beans-navy beans-kidney beans-lima beans-black-eyed peas-lentils-cocoa-carmel-mushrooms-green peas-molasses-beer dried fruit-raisins-dates-brown rice-nuts and seeds-but hey you can eat as many fruit roll-ups as you want!
yeah they make me flare-heat-stress-scratches-bruises-cold-any activity that is stressing to my body so I cannot exercise.If I cut my legs shaving-or fall and hurt myself(which happens a lot) riding too long, having to go to the bathroom and not going right away. medicine changes.dr's appoints. you can take your pick!

Does "baba ghanoush" bother anyone? If you're not sure what it is, look it up on google. It is a middle eastern eggplant based "sauce" or "dip".

Newly diagnosed with BD

Newly diagnosed after approx 12 years of wondering...

I was just officially diagnosed with Behcet's on Friday - I was so excited on Friday to finally have a diagnosis after 12 years of wondering but since then i have gotten somewhat down and overwhelmed with information. I knew this was going to be lifelong no anyway but now it all just seems very real. And then yesterday I was exhausted and spent most the day in bed because I did something out of the norm on Friday. So that really didn't help. So now I am just trying to find places of support and information so I can remain informed.

I fully understand, I recently got diagnosed my self, and like you I was glad to be told what was going on, but the days that it isn't good, are not great at all, I do hope you find some support, as I no how hard it is,I'm in new Zealand and at the moment there isn't much but good luck :-D

I am so happy to have stumbled upon your post. I started having symptoms a little over a year ago. I was just recently diagnosed with behcets. I am lucky enough to have the most amazing family doctor & was referred to a fantastic rheumatologist to make this process a bit easier. Mr symptoms were mostly recurring, painful mouth ulcers and I had general sores twice. I have had the joint aches and pains as well as headache and fatigue. We are trailing some meds while being off/on prednisone when I get flare ups. I am struggling with the fatigue the most out of everything. I find myself so emotional and just so "sick of being sick".. It's truly a struggle. The things I used to enjoy doing just make me so darn tired now.. Or else cause stress on my body and result in a flare up.. My doctor himself has an autoimmune disease and has given me some reassurance that once we find the right medication regime that my energy levels should improve a bit. I'm hoping to focus on my diet and fuelling my body with proper nutrition will help. Best of luck to you!!

Yeah, it is hard you are thinking this is it. Finally I am not crazy. This is real. I hate any schedule changes it will make me flare. before I even get home.I have had symptoms for as long as I can remember. they were dismissed by drs mouth sores, genital ulcers oh it is staph or strep she is not cleaning well enough. so then my mom is standing out in the hall yelling while I am in the shower don't forget to wash front to back,do not sit on the toilet seat. when I had them on my face quit touching your face. keep your hands away.My sister still does that to me and I am 41.I went threw denial, thought it was going to pass or the magic pill would cure it and I would never have it again.the flares are terrible, ulcers,migraines,anxiety,vision loss,joint pain,extremely red eyes,(they always said pink eye) fatigue, gastricparesis, I had to gain 25lbs so I had some weight to sustain while throwing up weeks at a time. then comes the sore back because of the gastric paresis. insomnia been up for up to 7 days straight while in a flare.There is a light at the end of the tunnel so I am hopeful! But, it may be a train.

bechets or herpes?

Has anyone had the experience of conflicting diagnosis between bechets and herpes? Many years ago I started experiencing genital sores along with mouth sores joint pain and flu like illness. the doctors I saw were baffled by the appearance if the genital sores. I had two negative herpes test and one positive one, all swabs. even after the positive test my doctor still thought it wasn't herpes. I was tentatively diagnosed with bechets. this all happened over a period of 8 to ten years ago. I have been symptom free for about 13 years now except for the occasional mouth sore outbreak or sore joint episode, no more genital ulcers. I take no medications. I have floaters in my eyes as well, but that could just be age. my question is has anyone out there experienced anything similar with the misdiagnosis of herpes. I am married 16 years and don't use protection during sex and my husband is symptom free. I just want to know one way or the other and since I have no symptoms in so long I cant just get another test. any advice would be appreciated.

I did have mono in college but my Behcet's symptoms were much later, hard to fin what started it. Mono could be a trigger.

they are studying that right now. and I know there was a personal poll and 95% had mono. but my symptoms started before that

That's interesting!


i read that one member is use homeopathic remedies. Help please. I have tried to avoid numerous foods and taken chinese herbal meds. The foods do help, but i am struggling with genital lesions, which is obviously getting in the way. My poor husband. I do not do well with medications, such as Immuran, methotrexate, Embrel... they have all caused serious or temporary reactions. I take colchicine and prednisone. however, the prednisone has caused severe osteoporosis causing me to break my ribs from coughing. the colchine has added to the neuro symptoms. I need help please

I believe what I use would be considered homeopathic remedies. I currently take Veldona (low dose interferon) however it's off the market right now. In addition, I take over the counter supplements and paximune. I would recommend talking to Dr Cummings. He makes Paximune. It also contains inter-feron (even though the packaging won't mention it due to regulations) His email address is
This may not work for you. I am not in the medical field. I am just a Behcet's sufferer and found a way that works for me to help reduce my pain and flares. I am not affiliated with Paximune (just a long time user)

in the last 5 years, I have temporarily been on prednisone when a bad flare started.

Interferon balances my immune system. Prednisone suppresses. They cannot be taken at the same time.

My naturopath started me on turmeric capsules three times a day and 2grams of omega 33-66 twice a day for inflammation. Granted, I have just been newly diagnosed and have been having symptoms for a year. Good luck