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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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hi all in 2010 i developed great pain in my right eye(blind in this eye for 20 plus yrs )went to moorfields eye hosp in london where they found large iris cyst,at the same time i had a mouth full of ulcers and the consultant there asked me if i had any ulcers around my groin,i said no as i hadnt,anyway since then i am back and forth to moorfields oncology every nine mths and to guys hosp in london every 3 mths,just before xmas 2015 i had operation to insert seton thread into my bottom due to a fistuala ,but lately ive started to have slight irratation around my groin area,have been to many rhumatic doctors with bone pain over the yrs also,some doctors think i might have crohns but im begining to wonder if it may be bechets as back in 2010 the consultant at eye hosp mentioned it to me and i didnt at that time have irratation around my groin,,please,any advice for me would be helpful,i get at least 8/10 mouth ulcer flares a year and always 2/3 at a time,thank you for taking time to read my post,much love Maria





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I am battling with my doctor to treat me for behcets I have ulcers in my eye ulcers on my face and genitals have had 4 seizures and went to see a opthomologist and my retina is swollen I have noticed in the last 30 days my vision has gotten worse and I cry myself to sleep every night because my face is coverd in what looks like ance but I'm 27 years old and have Never had such horrible skin I don't know what to do or who to talk to!? I also have myasthenia gravis and have become much weaker and I am not sure what disease is causing what symptoms





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So sorry you're going through this. Try http://behcets.org.uk/ My son is under the London clinic and they are amazing. Good luck.

I'm 57 yrs old. Have had s severe milk..egg and gluten intolerance most if my life. Had meningtis a a two yr old almost died. Sickly child. Grew up battled boils and weak immune system. Age 32 high fever and diagnosed with ra. Now mouth sores..parathyroid. s...diabetes..eye problems..food allergies..headaches..stomach problems..kidney failure..knee ankle hand and elbow swelling. Fatigue.taking enbrel..prednisone..hectrol..methotrexate..met form in CT..awful diseases.native American.French ancestry. Sick of being sick.





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I am a 53year old women from the Chicagoland area .I was diagnosed with Bihcets vasculitis 10 years ago at Cleveland clinic. I currently am treated downtown at Rush hospital however my last 2 Drs. Have left and now have a new Dr. Once again. .I was an emergency room nurse for 23 years prior to being diagnoised with bihcets and had to retire and reinvent myself due to being immunosuppressd from.various meds to treat disease. I am now a landscape designer . I have had all my large intestines removed due to Necrosis and 9 bowel obsrtuctions . I have Experienced uvitis ,along with both mouth and genital ulcers and severe arthritis. I have been on prednisone from.the begining with maybe a total of 2years off throughout disease process. I was on Remicade and prednisone with pretty good results for years. I switched to humera for convience of being to give to myself at home over the last year with no results. I should have never went off Remicade as things are a diaster now. I have been experiencing chest pain with radiation to my jaw and lt. Arm pit since April. I have been in the hospital more than not with this since. I am scheduled to go to Cleveland this week for further work up . All my cardiac testing hasnt showed much. 60 percent occulsion to RA and LAD arteries but they feel it is cardiac not bihcets related. I was bolused with 500mg prednisone iv every 8hrs x 3. Then 60mg prednisone by mouth after . Im weaning down am at 30mg . The joint pain from.weaning is aweful. These are my Questions. I need a Dr. More experienced in bihcets that isn't moving soon in the Chicagoland area. 2. Has anyone experienced cardiac issues with bihcets and if so how were you diagnosed and treated. The pain is horrible when it comes on. I take nitro under my tounge when it comes on. It seemsto be happening frequently now and last several minutes. 3.any suggestions on weaning from prednisone . The joint pain awful.





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I've had Bechet's for 20 years. I found that erythromycin works. I was tested, and they found a generic predisposition. I've never used anything else, but Dr's allow me the continued use of the antibiotic while it's not traditional medicine. It works for me and they're thrilled it does. My case was severe though with an episode of viral infections, I have occasional mouth sores 3-4 times each year. But it's sustained me.

Im 45 yr old female. I ran to the doctor to get herpes tested every flare up. Which at first seemed to be approx every month at my period time. I also had herpengina at one time. I have dealt with this alone my family doesnt know much. My mom n dad have passed but i am an american with no decents to knowledge from the places its from. I usually get mouth ulcers often n the ulcers on vagina now are about once a year. I know that for me stress in extreme cases brings an outbreak. I only found out about behchets by a fill in doctor one day whom gave me the key to figure out what was wrong with me. I dont take meds as i choose not to. The only thing i take is prednisone for 3 days when having a bad flare and it gets the sores to start closing. I wish everyone of us a blessed life as we must see that its just what card god dealt us and we must live with it.





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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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Definately sounds like bechets it took my sons hospital 3 years to finally diagnose him. He was 12 when the symptoms started out of nowhere and now he's 17 still on 6 meds but at least he's finally off the predisone and doing so well no flare ups for over a year! I hope I'm not jixing it!

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.





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