Following living with recurrent large painful mouth ulcers within the mouth and on the tongue since 2004 I was tested privately a couple of years back for Behcet's at St Thomas's Hospital in London. The tests included blood tests, eye checks and a lot of questions. The results of which were inconclusive and it was deemed unlikely that I had the disease.
However since then my health has deteriorated somewhat with more of the Behcet's type symptoms becoming noticeable, large non-oral ulcers now appear in other less accessible embarrassing locations, minor skin damage results in pustules, aching ankle pain occurs suddenly and the pain disappears equally as quickly as it came on and most worryingly of all I had a DVT occur in May this year, which very unusually had none of the elevated D-Dimers (a small protein fragment present in the blood after a blood clot is degraded). That was first for the hospital that treated me and has meant that they had rewrite their rule book when it comes to diagnosing DVT's. All of which makes me think maybe I do have Behcet's.
I am now going back to my GP's practice and going to try to steer them into getting me referred again. I am now reading more about Behcet's and I have to say I do fear for the future. Living with ulcers was bad enough, but with all of the other symptoms now rearing their ugly heads I was wondering how people cope and what sorts of treatment (if diagnosis is confirmed) I can expect?
Written by
Cavendishman
To view profiles and participate in discussions please or .
Don't be afraid - there are treatments avaiable even if it turns out you do have Behcet's. Now that we have centres of excellence it is perhaps easier to go somewhere to get a dignosis and expert help. Your GP can refer you for free if you live in England. Other areas have slightly more complicated rules explained on the behcets centres of excellence website, but referrral is still possible.
Sorry that you are having these bad symptoms to deal with.
My diagnosis has not been yet confirmed, but I have experienced severe genital ulcers and I would like to have another diagnosis in London. What clinics would you recommend that have the best specialists? Or anywhere else in the world?
The centres of excellence all have a website. The one is London is part of Barts and Royal London group and is based at the Royal London in Whitechapel. Hideous underground but soon to be on cross rail with a brand new station .
The CofE are excellent, understanding and knowledgable. The treatment i have received and ongoing medication has made a big difference to me. There is light at the end of the tunnel and i find this group, and similar on Facebook very useful. In my case to ensure i am not going made and to learn from other experiences. Good luck and don't give up on getting diagnosed.
If you are in England you could ask your GP to refer you to your nearest Centre of Excellence. It will not cost the GP practice anything, and they are happy to work with people who do not yet have a definite diagnosis.
At a COE you will be able to see a number of different consultants at one appointment. At my first in January I saw a rheumatologist, an ophthalmologist and oral health specialist. There were lots of forms to fill in about my symptoms and their severity, and BP, weight etc were recorded and a blood test taken.
I took with me a lot of dated pictures of my ulcers, eye redness and skin lesions, together with a symptoms journal I had compiled over a couple of months. I was told this was very helpful in achieving a diagnosis, which was confirmed there and then. After the diagnosis I had a long chat with the resident support worker who advised on managing the illness. I left the clinic with a prescription for colchicine, a very helpful information pack issued by the Behçet's Syndrome Society and the reassurance that I could contact the Centre's staff at any time with concerns that might arise around the illness.
It is impossible to say what treatment might be recommended for you, as there is such a wide range of symptoms suffered by individuals with BD. Colchicine, steroids and immunosuppressants such as azathioprine are some of the more common first steps on the drug treatment ladder, as are topical treatments like Difflam mouthwash.
It can be a scary and confusing illness, but in many cases it can be managed quite effectively. Stats suggest that people with BD can expect to live a normal lifespan. Mine was not diagnosed until age 57, having had symptoms since age 6! But I have managed to lead an adventurous and productive life despite having no treatment whatsoever for my mystery illness. I found by trial and error that a good wholefood diet low in inflammatory trigger foods such as wheat and dairy, keeping stress levels down, plenty of low impact exercise such as walking and yoga, and getting plenty of rest at the height of a flare rather than trying to push through it were the keys to keeping it under control.
There is a good support network around the illness, so you never need to feel you are struggling with it alone.
Cavendishman: I also had DVT's as part of Behcets. I made the mistake of stopping my coumadin though. I did not know at the time it was Behcets and doctors thought it was a random situation. It was an incorrect assumption and the price I paid was a second DVT.
Also try not to fear for the future. Its not certain that your future has the worst of Behcets issues. Treatments, for whatever ails you, may very well be effective and you may not get a full blown onslaught. Dont give up.. Good luck.
Thanks for all the replies, feels good to know I am not alone, but for everybody else's sake I wish I was alone, some the symptom's of the disease are truly horrible.
Thanks for the tips, I will look into altering diet and reducing stress would be nice, if a little difficult having to run my own business. Recent episodes have knocked the action-man out of me a bit, so exercise has dropped off but up until recently I was competing in 6 hour endurance orienteering events, plus sprint triathlons, and have been competing in white water canoe slalom at a good level since I was 13 (now 45). Don't feel very motivated at the moment to get back into all of it, but I want to find my mojo.
Dan I have just finished taking Rivaroxaban (Xarelto) and I am now on just 75mg of Aspirin daily, but I am thinking I will ask to go back on the drug now in light of what you say happened to you.
Have an appointment for Tuesday with the Doc so lets see if I can get referred and hopefully get some effective treatment for all the symptom's.
Sorry to hear you might have Behcets. I to have had dvt and no markers in my blood. I have had 3 like this now and 2 with out any pain so just be aware of your body and how it feels.
Good luck
Having skimmed through the replies above, I don't think anyone has mentioned that inconclusive and negative test results are not unusual with BD.
Well I have been referred to London CofE. And I am on 5mg of colchicine twice a day. I am hoping things improve as my legs are bloody painful at the moment. But no other symptoms at present. The forum is a godsend for info. Has anyone else ever had meningitis? I survived it when I was 3 and the doctor I saw said it could be the trigger for the condition in my case.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I think my husband has Behcet's
Sports with Behcet's 
Explaining to your GP what Behcet's is ???, Please Help.
Finding the Answer to BEHCET's
