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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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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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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!

Hi, how did everyone on here manage to actually get a diagnosis of BD? My wife's been in constant agony for 5 months now with more than 22 ulcers in her mouth, down below and in her eyes, severe joint pains and an angry looking outbreak of lesions on her face that's spreading down her neck and onto her chest-they bleed and ooze without barely touching them. She saw a dermatologist who was useless and just dismissed it as acne (she grew up with horrific acne and this is completely different) The haematologist said her bloods were all normal so we're now pinning our hopes on the rheumatologist, as all her other doctors won't make a diagnosis. Our next option is trying the Bechets centre of excellence in London but that's a 2-3 month wait after referral and she can't endure another few months of this!! Anyone have any suggestions? Many thanks





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My rheumatologist diagnosed me. It's sounds like behcets to me. If you don't get a diagnosis suggest a medicine called colchicine. I take .6 mg per day and it has pretty much curbed all my symptoms. I also take steroids occasionally for the upstairs and downstairs ulcers. I know steroids are scary but the benefits tip me out way the negatives. Good luck.

I am 29yrs old/female and I have had Behcet's since I was 3yrs old. I only had three symptoms of Behcet's - oral lesions, constantly being sick, and vaginal lesions. I now know that it is common for genital Behcet's lesions to be misdiagnosed as herpes, so *insist* on having lab tests done for your wife. I had to have three separate swabs and a double biopsy of the vaginal lesions all come back negative plus make the ObGyn aware of 10+yrs of oral lesions I had suffered before the doctor was able to make the connection. Without that doctor's insistence on figuring out what was going on, I might still be undiagnosed. The ObGyn sent to see a Doctor Jean-Claude Bystryn (the last name may be misspelled) out of Mt.Sinai Hospital in New York City, the doctor who ultimately diagnosed me Behcet's. There are other doctors in New York City, a rheumatologist named Dr.Harry Speira Sr (again, possibly misspelled the last name) on Park Ave and there is now a Behcet's center. A neurologist and a gastroenterologist can also be instrumental in the diagnosis and treatment of Behcet's. !!!!! I should have said this before but I just thought of it, ***PLEASE*** search for and check out the American Behcet's Disease Association website NOW. The website has lists of resources, from doctors to treatment to support groups. Go there asap, you will find alot of information and have the best chance of finding a doctor to diagnose and treat your wife. Good luck.

Hi my symptoms started in 2004, I went through every department specialist u can imagine, and was only ever given predisolone and codeine, it was the most dreadful and distressing way to live, for me even after repeatedly telling everyone I think I have bechets no one would make the diagnosis for Defo , last December for Like the 8th time I was in excruciating pain with ulceration a in the stomach on top of everything else that comes with this debilitating condition, and a senior pain consultant came down to speak to me to see if they could make me comfortable, he took one look at my symptoms and in 30 seconds Said "you have bechets" it was like the whole world finally listened ! He couldn't understand how no one had ever actually agreed, and I never even mentioned bechets to him, u suffered absolute agony and embarresent from all the ulcers and legions which aren't pleasant for 10 yrs ! He insisted on writing toy GP with diagnosis and like that the nhs started to help me, I am currently under becets centre at aintree as I am now back up north, bur do go to the centre nearest to u, u do have to wait unfortunately , but if the pain is un bearable keep going to A&E and eventually like me though it took 10 yrs someone will identify it, I hope you get the help u need I feel for you both it puts a lot of strain on your lives, bless u both and good luck.

Hi, there are two others centres of excellence in th Uk, one in Birmingham and one in Liverpool, please see your GP and ask to get a referral to either of these? The distance is a pain but it may well reduce your wait? ( I am presuming you already live in England)

My daughter has had constant ulcers in her mouth for 5 months now. She has also experienced intense joint and abdominal pain as well. We have taken her to 3 different doctors and are thinking this is what she has. She is only 9. It breaks my heart!!





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I was diagnosed when i was 6 im now 14

I had my first symptom of Behcet's at 3yrs old and it took until I was 13 to be diagnosed with Behcet's. I suggest that you search and visit the American Behcet's Disease Association website ASAP to get your daughter help. The website has many resources, from doctors to treatments to support groups, that will hopefully help you get your daughter help feeling better. I feel that what I say next is very important... After diagnosis (not by a pediatric physician!) I was sent to pediatric specialists. I'd strongly advise you NOT to do this. Even having a "Top 100 doctor" diagnosed me, my pediatric rheumatologist repeatedly insisted that I was misdiagnosed without giving any other explanations for what was wrong - it was upsetting, I cried every time I went to this doctor because she did not believe me. Another problem I had with this same doctor was that every time I had a 'breakout' vaginally the doctor would make me wait so long to see her that when I got there my breakout would be cleared up (by medicine from another doctor who refused to let me suffer for a month and a half until I could see the specialist).... My advice to you is to find a primary physician that treats you and your daughter, is local, knows what Behcet's is and who understands the importance of seeing your daughter asap. With Behcet's, waiting weeks or months for an appointment when new symptoms arise is not an option. I hope that that your daughter does not have Behcet's, but if she does, I hope that the information I gave will help make things a little less scary and stressful for both of you... PS - it sounds like you're already being supportive, empathetic, and understanding... Keep it up! Your daughter is going to need you to be there for her so much, sometimes daily, for months, even years, at a time. I was sick for 10yrs without diagnosis and it's been 16yrs since... Without my mom by my side through these 26yrs, I know that I couldn't have done it alone. And when she lashes out at you, try to remember that your daughter is going to be going through so many hard, scary, hurtful things, almost all of which is going to make her feel isolated. There are therapy groups that focus on coping skills..please go, you and your daughter are both going to need them.... I wish I had tried them sooner. One last thing... ***don't give up, you can get through this, you can both be happy, believe that. And trust yourselves, if something feels wrong to either of you, take notice.





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