Communauté La maladie de Behçet

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Behcet's without genital ulcers

Every doctor I have been to first says they believe it could be behcet's, then they do a test and everything shows up as negative. Finally I get to a doctor who is treating me with colchicine for the mouth ulcers and tells me that he thinks it could be but then he says that he won't put it in my chart because, regardless of the arthritis, mouth ulcers, uveitis and skin lesions, he wants to wait for the actual diagnosis until I start to show genital ulcers.
My question then: Are there others out there that have behcets with most symptoms but do not have the genital ulcers? Also how did you get the actual diagnosis?

Hi Steffi, I have the exact same symptoms than you but not the genital ulcers. The doctors did mention that usually people with Behçet have genital ulcers but its not the case, I think it's best anyway. It has been like this for 13 years. Some people like us are just different ! Take care

Thank you for your response. I knew there had to be more. Everything I've read said usually has genital ulcers. Not always.

I didn't have genital ulcers until about 3 weeks after my diagnosis. After that, it really confirmed it. However, I still qualified for the diagnosis for a long time (though was misdiagnosed for awhile). You don't have to have genital ulcers to qualify.

Je m'habitue à vivre avec la maladie

J'ai 31 ans. Cela fait deux ans que je suis malade. Je fais des récidives tous les deux mois, et maintenant cela fait cinq mois que la maladie a commencé à se stabiliser.

Ce n'est pas toujours facile de vivre avec la maladie. J'ai des aphtes chroniques et des douleurs articulaires et de la fatigue. Et maintenant, j'ai des problèmes à l'estomac. Il y a de la nourriture que me rend malade. J'ai des douleurs dans les ophages.

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

Bonjour Nena,

Votre histoire est similaire à la mienne, je viens d'être diagnostiqué avec Behcet aussi après 2 ans de symptômes pour lesquels mon docteur ne voyait pas de lien avec Behcets, il y a 2 semaines, j'ai été hospitalisé et diagnostiqué avec Behcet, j'avais des douleurs extrêmes d'aphtes et d'ulcères génitaux, et des douleurs articulaires, et un nodosum érythème, ils ont commencé à me donner de la Colchicine, et le médicament a fonctionné au début... maintenant, je suis de retour chez moi depuis presque une semaine, avec 2 Colchicine par jour, mais j'ai déjà des aphtes sur ma langue et les douleurs articulaires sont toujours là, je peux aller jusqu'à 3 cachets par jour ils ont dit, le seul problème est que j'ai des problèmes à l'estomac aussi et de la diarrhée....quand je suis revenu à la maison, je ne savais si je devais être heureuse qu'ils aient trouvé ou être inquiet....je suis toujours en attente, mais j'ai parfois peur, parce que je suis une mère célibataire avec des enfants de 14, 5 et un qui va avoir 2 ans le mois prochain....j'ai aussi remarqué une relation avec les aliments et les crises même avant que je sache que c'était Behcet.....Ce qui me surprend le plus sont la relation entre le stress et la maladie, parce que ma première crise s'est produite après que mon ex, le père de mes 3 enfants m'a quitté pour une femme qui a la moitié de mon âge....2 semaines plus tard, j'ai développé des ulcères génitaux et de l'arthrite dans mon poignet et des aphtes dans ma bouche....après cela la maladie s'est développée, et j'ai des aphtes, des douleurs articulaires et des ulcères génitaux, ainsi que le nodosum érythème. Ils ont vérifié à l'hôpital et je n'ai pas de problèmes avec mes yeux actuellement et pas de problèmes vasculaires. Oui, mais quelqu'un sur ce forum a dit que c'est une maladie bizarre et je suis d'accord à 100%. J'espère que cela va se stabiliser mais pour l'instant, je pense que les médicaments doivent être ajustés, mon rhumatologue a aussi parlé de peut-être passer à l'azathioprice, mais je ne sais pas comment cela va se passer...
J'espère que les choses va se stabiliser pour vous et bonne chance
Silvia

ton histoire m'a vraiment toucher mais il faut savoir une chose que le stresse n est pas bon pour la maladie des moments il peut etre un declancheur mais il faut pas s'inquieter ;au moins toi t a des enfants moi sa pourrait etre une grossesse a risque ; mais je vais la tenter car en ce moment je suis en plein forme j ai des petit aphtes desfois mais pas trop et j ai moins de doulours et j espers que je vais rester comme ca bon courage et prends soin de toi et de tes enfants merci nena

Is this Behcet's?

Hi

I am a 31 year old female living in the United States. My background is of Italian ancestry. 6 days ago, I noticed a sore throat and a white bump on my right tonsil. I thought it was just a sore throat or infection. The next day, I noticed a small white painful sore on the inside of the right side of my labia. I thought it was some sort of STD and called a GYN right away and on the 3rd day went to see him. He said he thought it could be Behcet's, but that it is very rare in the US, and more common in the Middle East. He is in his 50s and said he has only seen it one other time in his career. He said I should see a Dermatologist.

The next day, I was able to get an appointment with a Dermatologist and told him what the GYN said. I also told him that now I had developed a red bumpy rash on both side of my body from hip down through my thigh, as well as what looked like a crazy acne break out all along the top and down the middle of my behind. I never break out like that. He said he wouldn't rule out Behcets, but it's hard to diagnose and could also be Fixed Drug Eruption which is a reaction to medication, could even be something like Advil or Aleve. I looked up photos of both issues and my sores in my throat and genitals (which had spread to the left side of my labia by day 3) were growing fast and resembling the photos of Bechets - large white sores. He gave me a steroidal cream to use on the sores (first I started w a sample of Topicort, and then started using the actual stronger prescription last night - Clobetasol Proprionate). The topicort has done a good job of stopping the sores from continually more than doubling in size on a daily basis as they had been. They seem to be getting better, but it seemed like a huge difference the first day, and is now going slower. I started the Clobetasol last night and don't know if this is just a new problem, or if this is some reaction to the cream (though, I called the dr and he said it shouldn't be and that I should now see a Rheumatologist), but as of last night my body is in extreme amounts of pain...last night it was my whole back, but is now more my middle and lower back and hips. I can't lay or sit down. Standing is least painful, but still uncomfortable and I have to pace the house or do something to distract myself. I am very sure this is a muscle pain, but am hoping there is a slight chance maybe it's some sort of gas pain because I didn't eat for about 30 hours and then had some food last night. (Stopped eating because as the cream was helping the sores to heal, it sort of started lifting like a scab down below and was excruciating when I peed.) Since last night the sore hasn't been AS painful (though still hurts - but I don't need my poor boyfriend's assistance when I'm trying to pee in the tub to splash water on me while I attempt to block the ulcers), so I've been eating and drinking a bit again.

Anyway....I don't want every doctor to just keep sending me to some other doctor. I don't know if anyone in this community is from the NYS area, or knows any good doctors familiar with the disease. I'm in the lower hudson valley and willing to travel to CT, PA, NJ, or upstate New York if necessary. What kind of doctor should I be seeing now?

Here are my other symptoms. Does this sound like Behcet's for those of you that are familiar with it:? (Note: of all the rashes listed...none of them went away but just continued day to day as more appeared)

11/29: White Bump on Tonsil and Sore Throat
11/30: Sore on Right side of labia
12/1: Morning: Rash on right hip and some bumps on forearms (neither hurt or itch); Night: Very sore left hip (this has been a problem for me in the past but it was out of nowhere and hasn't bothered me in a while)
12/2: Morning: Rash on both hips, acne rash on top/middle of buttocks, canker sore? (or another ulcer - though not very painful) behind the middle of my top lip, sore on left side of labia; Evening: rash on right side of groin. Started Topicort this evening
12/3: Morning: Sore dry skin on toe knuckles, bumps on hands (not itchy, and only painful on thumb knuckle); Evening: red rash bumps behind knees (not itchy or painful), small canker sore in left cheek, occasional mouth/tooth/gum pain if I bite down
12/4: Morning: more bumps on hands; Evening: Right thigh rash started itching (but it was only temporary), rashy bumps on feet, rashy bumps on stomach; Night: Extreme Body/Back/Hip aches and pains
12/5 (today): Morning: Rashy bumps on right armpit, itchy breakout on chest, nose has some red blotches but no bumps (just looks red in some spots), rash on right side of buttocks started itching (I had tested the steroid cream here with the advice of the dermatologist...he said he wasn't sure if it would help. When I told him I think it made it worse because it started itching, all they told me was that it shouldn't be making it worse...)

I got about 2 hours of sleep and have been out of bed since 5:30 am because I couldn't lay down. Was hoping the achy-ness would subside as I went through my day, but it hasn't.

I also think it's worth mentioning I occasionally have suffered from Raynaud's Syndrome for the last 8 years. It is a blood capillary disorder in the fingers and toes.

Thanks so much to anybody who could give me some input!!

Hey Nicky - thank you so much for your reply. I'm feeling much better than when I wrote this entry a few weeks ago, though not 100% yet. That night I ended up in the emergency room for the amount of pain my body was in. It was so hard to try to explain to my boyfriend why I was hurting so much. (In the emergency room, they tested me for Flu & Lyme's Disease which both came back negative.)

Luckily, the very first dr I saw had seen Behcet's before and suggested it, and also referred me to the dermatologist. Drs are telling me it is too early for a diagnosis yet, but I'm at least seeing a bunch of drs who have good reviews and can hopefully work together to figure out what's going on with me. I saw an ENT yesterday and go to the Rheumatologist tomorrow. I was wishing the same thing about the vaginal sore when it showed up - I wish it had been a treatable STD so I could just treat it and not worry about this happening all the time!

Good luck to you as well. I appreciate your response!

Dr Yasizi is the best on this issue and you are in the right place to see him. Get an apt immediately. Good luck

Thanks Steffy! I emailed him a few weeks ago when all of this was going on but he told me he no longer sees patients - only works on the research now. He also told me it was too early to be diagnosed so I should stay local.

Is it Behcet's?

In 2005, I was diagnosed with fibro., due to muscle and joint pain, as well as bad head aches. About 5 years ago, i was diagnosed with neuropathy, due to nerve pain shooting up from my left foot and up my legg.I have been found to have polyps on my cervix about 4 years ago, about 2 years ago, i was diagnosed with GERD (they found patchy discontinuous granuality, friability and erythema of the mucosa during scope) and had my throat stretched 2 times ,due to not being able to swallow. I have had frequent boils on my body over the years and cold sores a few times a year. lately (last two-three months) i have had so many cold sores and blisters in my mouth, i can't count! My left tonsil seems to stay inflamed. My ears have a constant hum (for two years now) and my eyes have constant black floaters and i'm VERY light sensitive and have to where sun glasses outside on most days. I have tested positive for lyme (but doc doesn't think i have it, because i never tested positive b4 and have not been exposed/bit in years by a tic)! I was found to have nodule's on my liver,left lung, and kidney.Yesterday , i went to get a blood draw (because doc. suspects Behcet's) and i was stuck 15+ times because blood would stop flowing and she would find it hard to find the vein's, she "thought" she had!

Struggling in Texas

I am looking for someone that has been where I am. I was hoping on ideas that improved the quality of life.

I was diagnosed with Behcet' s about five years ago but have had symptoms for thirty years. My main symptoms are mouth and genital ulcers with eye problems and fatigue. I have been on steroids and colchrys for five years but due to worsening problems and continual flares I switched to Imuran. I am having liver problems now so I am waiting to see what our next move is. I just resigned from teaching because of health problems. Depression has been a problem as well

Thanks for the feedback. Just got back from the rheumatologist and had to go off Imuran. I am having trouble with my liver. I am back on steroids. A little disappointed because I was finally feeling better. I have started having stomach cramps and diarrhea. Anyone ever struggle with that?

Hello

I am a nurse and now off work too. I did the meds you are on too. I started with steroids , then methotrexate pills then injections, next was immuran, also eye injections too. I had terrible side affects and they really only helped a bit. Then I got on Humira last summer. It helped the most. Its a class of drug called a Biologic. You would be taught to give yourself the needle subcutaneously. Its usually given every two weeks. But I am showing neurologic symptoms so I started IV Remicade last week. Its also a biologic but stronger and given over a few hours in an infusion clinic. Its only needed once every 6-8 weeks. Too soon to say how well it will work. Like Immuran you have to get monthly bloodwork too. Hope this helps>>>>>Kelley

Hi Struggling in Texas > I know the depression you speak of. I'm on disability now for two years I was a social worker > now I need the social worker (lol). I'm 45 and I feel 65. I have no clue what to do with myself most of the time, and when I do > I don't have the energy to do it. Being on disability sucks but I do thank God for the income. It's just difficult to deal with.

comida saludable genera reaccion

hace un tiempo lei que las frutas secas y las bayas ,le habian provocado un brote de la enfermedad.Yo observo mucho que me pasa con los alimentos y la verdad que las dos veces que he comido frutos secos,tuve reaccion ,pero no sé si tomarlo como una alergia comun o parte de la enfermedad.Si alguien le paso lo mismo por favor cuentelo.Esta vez se me hincharon los parpados y tengo dolor en articular.

stefano
modérateur

New Italian Study on Behcet's Syndrome

Hi,

It 'was recently published in Autoimmunity Reviews a study on Behcet's syndrome: "Behçet's syndrome patients exhibit specific microbiome signature." I paste the link:

http://www.ncbi.nlm.nih.gov/pubmed/25435420

The research was supported and sponsored by the Italian association SIMBA.