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Conditions

Behcet's Syndrome

Behcet’s Syndrome is a rare disease that sees the blood vessels become inflamed. It’s more common, and more severe, in men than women and is far more prominent in Eastern countries. Someone with Behcet’s will most typically start noticing symptoms in their twenties, however the cause is unknown. The most common symptom of Behcet’s is the regular occurrence of ulcers in the mouth and on the genitals but further ailments can include inflammation of the eyes, skin, arteries, veins, joints, nervous and digestive systems and heart. There is no strict way of diagnosing Behcet’s, though Doctor’s will consider it an option if you report having at least three prolonged bouts of ulcers in the space of a year. If this is the case, then Behcet’s is most commonly pinpointed by ruling out other potential causes such as Herpes or Arthritis. Whilst there is no cure for Behcet’s Syndrome the symptoms can normally be kept on top of with various immunosuppressants which may take the form of tablets, a cream or an injection.

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My 20 year old Daughter has Behcets, diagnosed when she was in Middle school, she has had many combinations of meds,including Humira shots. At the moment she is doing well with Methotrexate and remicade infusions every 6 weeks. She started with ulcers in her mouth and nose and then her genitals.This combination seems to be working,she suffers a great deal with fatigue and stress seems to always bring on a flare. So life can be a real roller coaster. She is in college and I must admit they work with her and give her support where needed. Our doctor at University of Michigan is fabulous and has been working with my daughter since the start. I know this is never going away,but I hope she remains in control of it and not the other way round.





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My son was diagnised with Bahchet's syndrome in 2014 after years of mouth ulcers, clots on his brain, loosing most of the sight in one eye and clots in his main artery in his leg. The artery erupted and he underwent repair to the artery, but this week we were inforned that the operation was not successful and they will have to reoperate on his leg again. My heart is breaking for him. He was 28 years old when he got ill and he is now 31years old. This is awful, He was a fit person when it all started and now he is depress and heart broken, I would change place with him if i could.





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I understand as I too am a mother of a son with bechets! Diagnosis 5 years ago! Just as life just started with them; it slowing being sucked out! It is so hard not to be able to take away their pain! And all they terrible affects on their body. God help them

Looking for answers, maybe Behcets? A little history first in 2010 when my son was 8 he developed blood clots, erythema nodosum, and other raised nodules on his skin. His immune system had all the elevated markers with high sed rate and CRP. They have never gave us a real diagnoses, but have just treated him with methetraxate and blood thinners for the past 4 years. I am always researching for answers and my son has always had mouth sores that are very painfully and they come and go every couple of months. Could this possibly be Behcets?





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I was dxd at age 43 after years of mouth ulcers, occasional genital ulcers, but worst of all, wa sthe intractable joint pain and sheer exhaustion. It took the hospital 19 days to confirm diagnosis after I had swollen joints, temp of over 40degrees they couldn't get down, and ulcers in one end out the other, plus joint swelling and skin ulcers over the body, and end of my nose went black and came off. They put me on massive doses of prednisolone ( a steroid) with azathioprine. My CRP/ ESR (blood tests for inflammation) were very high, and still fluctuate, but are not always in synch with how I am flaring or not. The worst complication was optic neuritis with brain inflammation in one eye, I lost colour vision, and was staggering around and slurring my words like a drunk as brain was inflamed. another patient suggested it as a diagnosis as optics dept at hospital wouldn't take me seriously, my rheumatologist was prepared to follow the hint my fellow patitent had suggested, and admitted me as an emergency on a steroid drip (gramming) - luckily my sight came back, but I had to give up my career, and will always be ill and on meds, I also have rheumatoid arthritis and osteoarthritis, but have now managed to return to work, supporting students with disabilities, and making use of my experience as a patient/carer to help teach nurses, OTs and physios at university level. Find a GP that will listen, and keep on nagging until you are taken seriously, in the UK the Behcets syndrome society is an excellent and reputable source of accurate information, and support, and up to date understanding of research and centres of excellence they have helped get set up around the country. Good luck all,





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I live in Chicago and am fortunate enough to have access to a doctor who is a part of the ABDA and has thoroughly studied Behcet's, thus leading to a speady diagnosis. My first episode occurred when I was 16. I was first sick with a fever and flu-like symptoms for a few days, then the genital sores started. I went to the gyno and had a different doctor than I normally do, who tested for herpes. The test came up negative. He theorized that I could have a mutated string of mono. I was still prescribed an oral herpes medication to try and get rid of the sores. They disappeared in a few days, though my flu-like symptoms remained for a few weeks. Then, this past summer, as an 18 year old. I had an outbreak of three successive canker sores. I have always had canker sores, but I usually only get one that lasts for a couple of days and goes away, and they don't return for 3-4 months. After the three canker sores, a genital sore appeared. I went to my regular gyno, and her and another doctor examined me, looked into a reference book, and suggested Behchet's. They also gave me a topical corticosteroid cream to heal it and help with pain; it did neither. In fact, I am almost convinced that it prolonged the episode because I had had the sore for around three days prior to the doctor's visit and it had already started to fall off/disintegrate and when I was given the cream, I had no change for FOUR weeks. Yes, I lived with a genital sore for that long. Months later, I had an appointment with the rheumatologist that I mentioned studied Behchet's, and after a lengthy discussion of my medical history, concluded that what I had was likely Behcet's. They prescribed me a pill to take if I were to have an outbreak of either canker sores or genital ulcers. I also have a mouthwash to use for the canker sores. Since then, I have had three canker sore outbreaks, the first one lasting a month, the other one a week, and this one I have currently is coming on a week. I just want a cure, or medication that works a little better at subsiding the agonizing pain! Especially with the genital ulcers! I can't walk/move for four days with those sores, and even after I am in pain for weeks!





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Who is your behcets doctor in Chicago? I live in Chicago, too, and am looking for a rheumatologist specializing in behcets. Thanks.

Dr. Calvin Brown out of Northwestern! I also see Dr. Zineb Aouhab. Unfortunately, they only take new clients in the beginning of fall, so around late September. But Dr. Brown has actually done research for the American Behcet's Disease Association, so he really knows the disease. I was prescribed Colcrys which is supposed to help with oral and genital ulcers. So far, it has worked on and off with my oral ulcers but it really works with genital ulcers. I felt one coming and starting taking Colcrys right away and it never developed into an actual sore and the stinging sensation was gone within a few days! So I definitely recommend getting in with Dr. Brown, even if it is a bit of a wait.

My daughter is nine and has her first genital ulcer , seeing GP tomorrow so it's documented ! She has been suspected BD for last two years and has mouth ulcers and nose lesions nearly all the time, plus gastro and joint pain . She also has Joint hyper mobility syndrome and is on colchine and pirztofin for migraines which worked at first but symptoms much more aggressive now. I feel everyone's frustration as they need to be seen with symptoms and instead you get ' looks fine' two days later another flare comes. Take photos and jot down in a diary been the only thing that's kept me sane at times!!





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Wow! I've had bechets for the last 20 years and it sucks. I feel for all of you. Please, please get your eyes checked. I lost the vision in my left eye and it still frustrates me to this day. I too, used to be so frustrated with the genital ulceration and I've been tested for herpes so many times, it was horrible. The frustration of going to specialist to specialist and not getting answers was awful. Always, the flare would have calmed down by the time I saw them. The exhaustion was evil, people never understand as it's one of those invisible diseases. I also went on to have neuro behcet's and now have Epilepsy as a result. Please find a rheumatologist or an immunologist. Not sure if you can get it where you are located (I'm in Australia) there was an awesome mouth anesthetic that I used to take so I could eat. It's called xylocaine viscous.





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My daughter had her first behcets symptoms at 14 months old with over two dozen canker sores (aphthous ulcers)in her mouth. This was her 'immune response' to being exposed to others with illnesses and she rarely got sick herself. Later during puberty and beyond there were isolated genital episodes. Luckily the docs she saw recognized they were non-herpetic - the molecular structure and location of the two is different although the average law person won't be able to see this, educated providers of medical care should know better. Yes, we had a dentist that also should have known better and referred to them as herpes. When she was 24 she had her first major "flare" which in her case affected her abdominal area. She awoke in intractable pain in Feb of '06 and has been in that same possibly worse level of pain since. My husband is a biostatistician in a major university and therefore we have access to top research. I suspected behcets immediately, the first several docs she saw said it was in her head - she needed a shrink and refused to help. When I suggested the diagnosis, several docs responded with her being the wrong ethnicity and it was impossible. We have been to NIH, to vasculitis conferences, and found some help with the ABDA - a fine group of individuals experiencing behcets at various levels. Typically, the disease flares and subsides. We are still waiting for subsiding/remission. Typically the first and worst flare occurs in mid-twenties and is preceded with multiple occurrences of aphthous ulcers and some with genital aphthous. This is the typical method of diagnosing as well although other causes must be eliminated. She has folliculitis - an inflammation of hair follicles - also typical symptom of behcets; joint pain - also very common which she has found somewhat relieved by hydrotherapy. This is much safer than steroids which she was on for years but was able to stop as soon as she got into the water. If you are on steroids, make your doc adjust the dosage down to find the level that you still get relief. She found that anything over 7mg/day gave no additional benefit. Surgery - Joy - never, or at least not for that. Behcets is a form of vasculitis. It is not simply (excuse that - nothing simple) auto-immune, it is auto-inflammatory. You have to be real careful about disrupting tissue unnecessarily. A cut or lesion will introduce another potential area for an ulcer to occur. My daughter wishes she had ulcers again instead of this gut pain. Her treatments now include pain management meds, remicade and imuran. These are the ones most widely used for behcets although when you go through the piles of research you also find instances of spontaneous remission which makes you wonder if you are not doing more harm than good with all this toxic garbage! She's tried them all and found small amounts of relief making it more bearable. We still hope and pray for the spontaneity to hit! good luck to all!





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I also had extreme gut pain, was diagnosed with crones disease, 10 years ago. Took four years for doctors to recognise. Take small dose of sulfasazine which keeps the pain in check. Diagnosed with BD 2 years ago.

I'm 29yrs old/female. I've had symptoms of Behcet's since I was three, diagnosed at thirteen and I'm still working with my doctors to find the best treatment.. The American Behcet's Disease Association website has been extremely helpful and has alot of resources. ***PLEASE GO CHECK IT OUT IF YOU WANT TO HELP YOURSELF OR SOMEONE YOU LOVE ❤ *** Good luck everyone





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Heard the name Bechets when I was around 35-36 years old. All my symptoms were written up to other things. My GYN, after testing my 1st case of genital ulceration, told me it was herpes DESPITE HE FACT THAT THE LAB TEST WAS NEGATIVE for HERPES. "I know what herpes looks like". Ego. Anyway, other symptoms arose until now I have a plethora of Bechets symptoms and it's still not been diagnosed. Body pains traveling from head to toe— arthritic looking and feeling hands & feet, PAINFUL intestines/stomach (IBS was a guess), unexplained fevers, unexplained cough for years tho I never smoked. Feel like a hypochondriac. Am 63 now. Lung cancer survivor but am concerned that no treatment for bechets could make things even worse...





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Same thing happened to me. Repeated negative herpes tests negative. treatment for herpes ineffective and by luck alone, saw a doctor who recognised Betchets. Keep trying different doctors and get referred to a centre of excellence, such as Barts. Help is out there! Good luck!





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