Are any members with WG ANCA negative ?

[Essex-jill]

i was diagnosed with WG 13 years ago and have always remained ANCA negative. My saddle nose deformity and nasal biopsy confirmed WG.

I wondered how many other members are also ANCA negative. Because of this it can be difficult to monitor my condition. Thankfully Dr Jayne at Addenbrookes always listens to how I feel.

[PatriciaAnn]

I have occasionally been ANCA positive, but most of the time I'm negative. Even when I flared I was negative. It's only a tool the doctors use along with everything else. We can feel great and be positive and feel like c**p and be negative. Hope that helps.

Sorry about your nose. Fortunately I don't have saddle nose but I do have an indentation in the bridge of my nose which is permanently bruised. Fortunately the bridge of my specs covers it. I also have a hole in my septum. My docs keep a close eye on things. My dread is that one day it will collapse.

[Hidden]

I've never shown particularly high C-ANCA levels even when my WG/GWP was at it's worst. Even a flare earlier this year only peaked at 12 although I felt pretty yuk. I've certainly encountered patients with -ve ANCA but have been very ill. One thing we're all agreed on is that this damned disease needs a more reliable and definitive biomedical test. Dr Jayne is a great guy and has said to me that the most measure of health is simply how we actually feel. I certainly don't believe that 'doctor always knows best...

[John_Mills Volunteer]

According to Lisa Willcocks, Immunologist at Cambridge, only 70-80% of patients with clinical WG show a +ve result for Proteinase3 (ANCA c) and 10% +ve for Myeloperoxidase (ANCAp) so that means 10-20% of patients with active WG show +ve to neither.

Unfortunately, not all doctors treating vasculitis patients realise that the ANCA test has a 1 in 6 chance of giving a false -ve, so some patients don't get the treatment that they need. I agree with Martin. In my opinion the search for a definitive and reliable biomedical test should be a priority.

[Kenneth]

I have had WG/GPA since 1996 I have once proved positive to ANCA, that was when i had a test just before a major operation at the beginning of my WG. My symptons accually started in 1994 but was not diagnosed until 1996 under Martin Lockwood. I have not had a positive result since.

[lisa-ranyell Vasculitis UK Volunteer]

I have had WG for 5 years and have only been positive once. even when i was at the height of my illness i was negative. Like you i was diagnosed by biopsies and my saddle nose, also by recurrent symptoms. got progressively worse until i was lucky enough to be given rituximab and have never looked back