I think my husband has Behcet's: I think my... - Behçet's UK

Behçet's UK

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I think my husband has Behcet's

fatimaamir
fatimaamir

I think my husband has Behcet's. He has had recurring mouth ulcers since September 2017 (when we got back from our honeymoon). He probably has new a mouth ulcer every other week. He is from Middle eastern decent. Other symptom he has are skin lesions - had them before I met him, headaches which started around the same time as the mouth ulcers, occasional body aches and fatigue. The symptoms he does not have are genital ulcers, visual problems and gastrointestinal problems. He went to a general doctor who referred him to a mouth specialist, and the mouth specialist referred him to a rheumatologist. His appointment isn't until next month. So we will find out more then. Based on his current symptoms do you think he has Behcets? At what point do other symptom start to appear?

5 Replies

Behçet's affects people in lots of different ways and the symptoms of mouth ulcers, skin lesions, headaches, pain and fatigue overlap with other diseases such as lupus. There is no set pattern to Behcets symptoms arising and not everone gets genital ulcers, eye issues or GI problems. Hopefully the rheumatologist will know enough about Behçet's to confirm it or rule it out. Are you in the UK? If so your husband can ask his GP for a referral to a Behçet's Centre of Excellence for diagnosis. Go to behcets.org.uk to find out about them. Referral info is here behcets.org.uk/referral-cen...

Good luck!

Hi, so my symptoms were very similar to what you’ve described. I haven’t had eye involvement yet but had skin lesions, oral ulceration and joint issues. I later found out I had genital ulceration that I wasn’t aware of. I’ve heard eye involvement can follow a few years after oral ulceration and sometimes the neuro version can follow that. The factsheets from Behcets UK are useful. It’s possible that he could have Behcets, so I would say keep a photo diary of you can and ask your GP or doctor to refer you to rheumatology or the COE direct. Best wishes

fatimaamir
fatimaamir in reply to SCMW

How are you doing now? My husband is always in so much pain because of his mouth ulcers. I hope he gets a diagnosis so he can get treatment and be pain free.

SCMW
SCMW in reply to fatimaamir

Hi, I’m fairly stable now thanks, I know how painful the ulcers can be. I had oral ulcers around the mouth but also the back of the throat and tonsils which were incredibly painful. If your husband isn’t on colchicine already, that resolved ulcers I had had for years within 2 doses they literally just vanished. I get very small ones now if at all. The triple mouthwash is the only other thing that brings proper relief with the steroid element. I hope he has access to these treatments soon and starts to feel better. Best wishes

There are a few other tests to help diagnose, but BD is usually diagnosed off symptoms.

He can get tested for HLA b51 or HLA B27 allele. I didnt test positive, but it can help point the right way.

He should get tested for B12 deficiency as will as his IgA, IgM, IgG levels. These also can help rule out other conditions.

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