Positive result to ANCA? : Recently diagnosed with... - LUPUS UK

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Positive result to ANCA?

Tripitaka profile image
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Recently diagnosed with SLE, today my rheumy told me I have a positive result for ANCA which I think is indicative of Vasculitis. She said don't worry you can't have vasculitis and LUPUS, but after some searching I have found out you can. Please can anyone shed any light on this?

Tripitaka X

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Tripitaka
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Hi Tripitaka,

It's all a bit complex. There are over 18 different variants of Vasculitis and 3 of them are associated with ANCA ( AAV ). You can have AAV and not be ANCA positive, you can also be ANCA positive but not have AAV! Vasculitis is a clinical diagnosis made on clinical features, blood tests, biopsies and imaging etc.

You can have both Lupus and Vasculitis but it's rare. What symptoms made them run the ANCA test in the first place? The best way to get answers is to see the most experienced Consultant you can, many of the top Vasculitis experts in Vasculitis have a special interest in Lupus as well. Where are you see at the moment?

Tripitaka profile image
Tripitaka in reply to

Thank you Keyes for your informative reply. I am seen in Neath Port Talbot Hospital in ABMU health board trust. Not sure why I was tested for ANCA in the first place, I have only seen the consultant twice including a diagnosis consultation and unfortunately I will not be seen again for 3 months. My main symptom is currently tingling feet/legs which are very restless in the night. I think I may need to see my GP in the meantime. I will ask next time though...why test indeed.

Thank you

TT

in reply to Tripitaka

I assist on the Vasculitis UK helpline. If you want to talk this over and get some more information then please feel free to phone or e mail. Have they ruled out peripheral neuropathy as a cause of your symptoms? The care in Wales is very patchy for rare diseases but I do know of someone in Cardiff that comes recommended.

vasculitis.org.uk/helpline

Barnclown profile image
Barnclown

I'm glad Keyes has replied: she is our Vasculitis guru here.

For what it's worth: attend a brilliant Lupus & Vascilitis Clinic in my hospital's rheumatology dept. My understanding is that my version of infant onset lupus is the vascular type (as is my ehlers danlos syndrome). Am 62 and recently my sjogrens & my PID (primary immunodeficiency) been more active than my SLE, apparently. My combined therapy daily lupus meds are appropriate to both SLE & SS & Vasculitis. My impression is that the overlapping conditions I'm managing are fairly typical of patients like me....and that I'm being closely monitored for actual Vasculitis developing, and that the highly experience clinicians at my clinic focus as much if not more on clinical examination & history as they do on test results.

I hope you'll keep us posted

🍀🍀🍀🍀 coco

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