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Behçet's UK
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BD related? Raw/red all over entire inside of nose with discomfort/pain...

My rheumatologist isn't that familiar with Behcet's and she thinks that without a visible ulcer/ulcers, the raw, really red and somewhat painful nose situation is not a BD issue. I value any feedback.

7 Replies
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Yes!! It is likely BD.... we can get inflammation anywhere. Sinusitis is a possibility bc tht is inflammation..... but red/raw/pain is most certainly in my experience & knowledge it is.. even another friend I kno online went to her ENT today & was told yes it is BD with ur same symptoms. Nasal spray with nornal saline may help to ease & lubricate it.... as well as talking with one of ur Drs even a primary abt it & getting a spray w corticosteriods or either oral ones..... but u can purchase the saline spray over the counter.... good luck

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Yes it is BD. I have been a sufferer for 28 years and at the onset my symptoms were ulcers or lesions or soreness or whatever you wish to name . I had them in the mouth, throat, nose, lips, hands, ankles, vagina and rectum. I would describe the ones in the nose as sticky scabs with a mucus and at times extremely sore and my nose nostrils would be swollen. More recently I am also being this on my scalp and my Rheumy who is probably the best BD doc in the UK said definitely BD.

Hope this helps

Hugs and smiles

Billi

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I think its related,look up 'magic syndrome' I have behcets and this and they are related,yours does sound the same too

Rosie

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What!! Am I getting this right? A Rheumatologist who isn't familiar with BD told you that sores inside your nose isn't related to BD!! How the heck would they know if they don't know much about BD?

I would say that it is definitely related to BD. I get ulcers in my nose, mouth, throat, intestines and girly bits, and they are all BD related. I find a steroid nasal spray is really good for nose sores.

Hugs

clare x x

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I get really fed up with Doctors saying that some symptoms are not related to behets. I don't know where they get their lack of information. I know I definitely get sores and inflammation in my nose and so do many others who have come on this site for the last years or so.

My consultant[s] use the nasal ulcers as a way of telling if it is behcets still aggravating my system. I get them in the mouth and also down below. Also suspected to have them inside where you cannot see.......just about anywhere really.

I must say thought that ulcers/blisters are not my worst symptom. My worst symptoms are really neurological.

If you put the word "nose blisters" or any other similar words... into the search bar just above on the right. You will get loads of discussions already had for this. On the right of these answers it will split up into various disorders.....behcet's being one of them and if you click on the Behcets Society logo this will give you previous discussions we have had in the past.

Hope this helps

Andrea

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Thank you to all who replied with your most helpful feedback/insight. You really provided me with some valuable information.

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Hi

On recent trip to centre of excellence it was explained to me that you can have 'erosions' which is the first layer of skin breaking down before a full ulcer forms at lower level. (or something like this!). I was given ulcer treatment to treat these. although they were not in my nose. i have had sinus trouble at other times.

Can you ask your rheumy or GP for referral to one of the national centres of excellence?

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