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Behçet's UK
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Suspected DVT

hi all,

I've been suffering with behcets for a little while now, I get the ulcers, the erythema nodosum etc, but over the last 3 days have developed the most painful swollen leg. I went to the hospital and they suspect DVT, I have a scan on monday to confirm. Just wondering if anyone else has had a clot? How common is it etc... Im not sure how to feel or what to think.

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Hello. I had a major DVT in my right leg years ago linked to Behcets which I had been diagnosed with and another suspected one in my left years later. My legs have never been the same again due to blocked blood vessels. They swell up a lot and can be very painful even now. I really wish you the best and hopefully, it is not a major clot. I am not sure why they are making you wait before having a scan though. Maybe they have given you blood thinners to start with?

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they gave me fragmin injections, which I have to keep giving myself until I have the scan which I should be getting monday.

it is all rather scary to be honest!!

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Yes. I can imagine. It is not a nice experience but trust you are in good hands. The proness to DVT was not mentioned to me when I was first diagnosed. It was all so strange and scary when my legs got swollen. Just take care of yourself and be hopeful

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Hi, I have pretty extensive DVT. For me the DVT kind of led to the diagnosis of Behchet's - long story. For me, before the swelling, comes intense fevers and sweats. This is because the veins first become inflamed, and it is this inflammation of the vessel walls that causes the blood to stick.

Are you already on medications that suppress inflammation eg pred or azathioprine?

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I am only on colchicine at the moment, plus a triple mouth wash for the ulcers, the ulcers are my main symptom. I have had a few bouts of erythema nodosum which led to my diagnosis.

The current state of leg is all new for me. Hopefully I will know more tomorrow.

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Hi Jim,

Unfortunately clots can be fairly common with Behcets, especially if you are male. The mainstay of treatment is immunosupression not anti coagulation as there is evidence that the clots in Behcets are " tethered " to the vessel wall and less likely to break off than normal DVT's. They are a symtom of inflamation as Behcets is a variant of Vasculitis which roughly translated means inflamation of the lining of blood vessels.

I will see if I can find some links for you. Do you see a Consultant with experiencing in managing Behcets? That's probably more important than ever now if this is indeed a DVT.

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For me it feels like this intense gnawing pressure pain that moves and makes my skin feel hot and my legs weak.

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Thankfully no clot!!!

Think I am having a bad flare!! :(

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