I am of Irish/German heritage and the Rheumatologist thinks that is enough for him to say this isn't Behcet's.

[newbeginning]

My primary care MD disagrees and says there are many who only know what they learned many years ago in med school or are just misinformed. Am about to do a trial of "Cholcichine?" A med used for gout. Anyone had success with it?

[tamirra]

Hi, my daughter tried this drug at the very start of her illness, but for her it was not strong enough, but since they are still struggling to find one that suits her. She goes to the clinic of excellence in Whitechapel London as was told that they think BD patients have been found to have either Irish or Scottish blood in them, but personally for her there isnt, although her father if a Greek Cypriott and this is where she has the illness from, im not sure how many on this site have either Irish or Scottish blood in them?

[frisky]

Well after first gp then local rheumatologist saying not behcts, I asked to see a specialist in the condition at st thomas, I was diagnosed with behcets and psoriasis arthritis, also looks like I've got neurological behcets.

I have Scottish, Irish, English and Spanish in me....????? If that helps with anything.....

I haven't been on Cholcichine, I'm currently taking methetrate, prednisolone and hyddroxychoroquine.

Ask your gp to see a specialist in the behcets field, you have every right to choose any consultant in the nhs, don't be fobbed off, if you're not happy.....

Anna

[devonshiredumpling]

As far as I am aware I'm pure Anglo Saxon! I have celtic colouring though but that probably comes from centuries ago.

Colchicine - the first drug prescribed for my behcets (ulcers) 6 or 7 years ago. I took it for a few years then stopped (I can't remember why). I started taking it again around 6 months ago and it certainly seems to help reduce my mouth ulcers.

[newbeginning in reply to devonshiredumpling]

That is good news! What dosage are you getting? I am so distrusting after all the runaround the past 5 years for a diagnosis. They still look at me as if this is some "stress disorder" it seems. - Lisa

[Witton]

I have been in contact with many people of different nationalitys with behcets. In my humble opinion I think you rheumatologist may be incorrect . It is a symptom driven diagnosis not an ethnic one. I have been on colchicine for years and I did well on it although lately my liver blood tests have escalated and the medics are looking into it .best wishes

[newbeginning]

Thanks. Even the University hospital here in San Francisco is teaching the extreme end of the symptom spectrum and ethnicity as the guidelines. So frustrating

[bailey23]

Hi

When I first had my diagnosis I was on Colchicine and it worked brilliant for my ulcers but unfortunately it raised my ALTS in my liver so couldnt stay on it but it really helped. I am irish/english heritage and I have no reason to have Behcets so my consultant just thinks it is one of those things or genetically passed down from generations ago. Dont let them fob you off. I waited 2 years for a diagnosis and I too was told it was stress to start with but eventually got the diagnosis when I became very ill. Dont let the Dr's fob you off and if you can seek a second opinion. Good Luck

Angela

[lesleyg]

I wonder if they would do a poll on ethnicity (hope that's spelt right). I'm pretty much anglo-saxon with a German great grandfather. I do have olive skin (takes after my father) but he is Scottish descent so who knows?

Lesley

[tamirra]

Thats interesting, it does seem that the clinic could be right in some cases, but my uncle Sinitta`s great uncle went back with geneology to the 17th centuary and found nothing about Irish or Scottish blood relatives. Confusing!

[andreafm]

This subject drives me mad a bit, especially as Doctors are saying to their patients that you can't have Behcets unless you have the right ethnicity.

The point surely must be that most people do not know their whole ethnicity and neither do your consultants and so judging a persons condition only by their ethnicity would be virtually impossible in most cases......how would this fair with somebody who was adopted with no information about their family ??

Also, how can they say on one hand, that this is connected to ethnicity but on the other hand isn't hereditory....it just doesn't make sense.

Just to quote the Behcets Society stance on this is :-

"No-one knows why the immune system starts to behave this way in Behçet’s disease. It is not because of any known infections, it is not hereditary, and it is not to do with ethnic origin, gender, lifestyle, age, where someone has lived or where they have been on holiday. It is not associated with cancer, and links with tissue-types (which are under investigation) are not certain. It does not follow the usual pattern for autoimmune diseases. At the moment it is defined as being a disease of inflamed blood vessels (vasculitis) - a ‘vasculitic’ disease."

Andrea

[irish_mike]

Well my parents have both Celtic heritage between Ireland and Scotland but mainly Ireland. I myself was born in Australia but l was raised in my parents homeland of the North of Ireland when my mum returned in the late eighties. However I do remember the questions of is your father Turkish and or of middle eastern descent. Think that's definitely the old way of thinking for Behcet's. The cholcichine I never had any success with personally but everyone is different so your doctors can only try, I guess. Well good luck with your treatment anyway.

[s10d7]

My daughter, 19, was diagnosed 3 years ago after several episodes of ulcers over 6 months. Perhaps she was lucky that we live in Switzerland and the diagnosis was quick. She has been on cholcichine for 3 years and although her ulcers erupt during periods of stress they are not as bad and she does not have to be hospitalized for dehydration any more. She also uses a daily steroid mouthwash (betnesol) which she spits put, which also helps.