Vasculitis UK
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Nasal septum biopsy

Hi, I have had a nasal ulcer for the past two years that just will not heal despite antibiotics and steroid spray. I have tried the Neil Med sinus rinse and find it irritates my sinuses rather than helps. I had a few respiratory issues at the beginning of last year and suffer with what I believe to be TMj and have sporadic pain under my chin and recently I have been suffering with headaches. I quite often have a very bizarre feeling in my hands during sleep which I can only describe feels like my hands are on a roller coaster.........strange I know! And it wakes me up. Had strange little bruises pop up and disappear but isolated and normally hands or feet. Anyway sorry for rambling! I saw an ENT consultant at Addenbrooke’s Hospital last week who thinks it could be GPA but after researching although I have a few symptoms I don’t have them to the degree that I feel I would have should it be GPA. I also have Rheumatoid Arthritis but it doesn’t present typically either and I also have roving pain that moves from joint to joint. Does this sound familiar to anyone? And can anyone tell me what to expect with a nasal biopsy? Is in generally done under local anaesthetic? Thank you for reading!

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Nasal biopsy will be done under local anaesthetic. I had it done a few years back. It wasn't painful, but my nose did bleed quite heavily.

The last nasal biopsy I had did confirm a relapse of GPA, but it is not always a reliable test, so further tests may be performed if it comes back negative.

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Thank you. I have just had some blood tests so they may show something!

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There is no definitive blood test that will show GPA, but blood tests such as ANCA will give an indication. Unfortunately the ANCA test isn't 100% accurate as well. The only sure fire way of diagnosing GPA is a biopsy of the effected organ, except for nasal, as mentioned previously, it isn't always accurate. Drs will prefer to do a nasal biopsy even though it's not 100% accurate, as it's less invasive than kidney or lung biopsies.

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Nb possibly you havever relapsing polychondritis. Do you see Dr Jayne at Addenbrookes ?? Nb typically with relapsing polychondritis the bloods are negative ???

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No it was under ENT I forget the consultants name without looking it up. Haven’t had bloods back yet. They were done Thursday afternoon so should be in now. I wonder if they will check for Relapsing polychondritis when they do the biopsy for GPA? Thanks!

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Not everything shows up on biopsy. It may be worth asking about relapsing polychondritis???

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I am having a nasal biopsy in june, from what I was told the initial needle to freeze it may hurt a pinch but I was told your awake for it. Once your frozen it will be fine. But also its possible to be put out for it but most times they dont. Im a bit nervous too. You will be fine :)

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Ahh thanks Calia, I am more than happy to not have a general anaesthetic! Under local sounds ok to me! Good luck with yours 🤞🏻

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So the ANCA test revealed a weak positive as the ENT called it or a false positive the Rheumatologist called it? Any ideas what this means? I am to go ahead with the biopsy. Thanks for reading!

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So to update this post, I have had my results from the nasal biopsy and the Rheumatologist at Addenbrooke’s has said the results and positive ANCA point towards GPA. Although there were no active vasculitis seen on biopsy there was chronic granulomatosis lesions. It would explain past and present symptoms. And also the fact that after my first flare 3years ago MTX greatly improved my symptoms. I started taking this due to my Rheumatoid Arthritis. I hope my story so far may help someone else in a similar situation. Also it was speaking to Lynn a volunteer on here that helped me in my journey to diagnosis as she gave me some sound advice and some great recommendations on possible next steps with the NHS specialists and who may be able to help with my diagnosis. Thank you 😊 I hope everyone is as well as can be.

Sarah

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