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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 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.

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.

I was diagnosed with Behcet's disease in 2010 when I was 14 years old. It began with severe mouth ulcers and all the other symptoms shortly followed. However, this site says that there is a regular occurrence in mouth ulcers for Behcet's sufferers but I have not had a flare up for 4 years now. No more ulcers since that dreaded time in 2010. Is this also common? Fingers crossed it will carry on this way!





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I went almost years without a break from oral lesions.. At that point I was diagnosed and the doctors started to try different medicines... I was put on steroids and it stopped the oral lesions almost completely... Could medicine be the reason for you not having them? Also, stress is a huge trigger, maybe you have been less stressed?

I was recently diagnosed with behcets, I Am 21 years old and have had 5 outbreaks in 8 months. Each outbreak seems to be worse each time. It starts rapidly in the same spots every time. Mouth genitals mouth and hands. It's feels at first as if I'm being stabbed with thousands of needles and over the course of a few days my mouth is so bad I cannot even drink milk without being in extreme agony. I cannot walk because of the sores on my genitals. They are bigger than a 50 cent coin piece each and ooze blood and puss. It almost looks like a brown recluse bit me on my junk and my finger and mouth. Once it peaks my mouth hurts so bad I cannot talk. My mouth will start bleeding from my teeth rubbing against my tounge. Vicodin doesn't help at all. Nothing does. Has anyone ever expierenced it this bad? I just want it all to end. Even steroids aren't helping.





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My son was diagnosed at age 19 with Behcets. Severe mouth ulcers, groin ulcers and on his face. Monthly infusions of Remicade have seen to be the best treatment with occasional prednisone in between.

I used to get relief from prednisone but it caused Cushing's so we had to stop... Have you tried colchicine or enbrel? I was on all of these before my doctors even considered Remicaid... Check out the American Behcet's Disease Association website, they give alot of treatment ideas, can help find doctors in your area and you can connect with other Behcet's people who can give you some ideas based on what worked for them. Good luck

my daughter was diagnosed at 11 after over a year of suffering with ulceration and arthritis ,,we have moved to a hotter country to help with the joint pain she hasn't had a bad flare up for a few years but currently id suffering one .im distraught seeing her like this ..she is 18





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I am 51 yrs old, I was diagnosed with Bechets 2 yrs ago after 8 yrs of severe Iritis, joint pain, mouth and vaginal ulcers. I suffer irritable bowel, have high blood pressure, underactive thyroid. I get very regular chest pain. The worse discomfort when I get a flare up, I get severe head and neck ache and my eyes feel as though they are under severe pressure. I now know this is due to inflamation of the meninges/cranial, it is scary when it occurs.





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My son (14 in the US ) got his diagnosis today . At first I felt relived to have a name , now I'm feeling scared





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