What is P-ANCA Vasculitis ?

[Ziggy]

Is this linked with a syndrome ? If so what one's? Or is this just a condition by it's self. What does one suffer from this condition? Can it become negative? Any simple explanation would be of help!

[Jann]

ANAC positive vasculitis be it P-ANAC or C-ANCA are just generic terms you then need to determine if you have WG, MPA or another type of vasculitis. Like any of the vasculitis condition there are a list of symptoms and what each person experienses can be different. For example WG can attack the lungs and or the kidneys. List of symptoms commonly experienced can be found on the Stuart Strange web site or others. I have ben told P-ANAC positive is commonly associated with Churg–Strauss syndrome. However I had P-ANAC positive reading and have WG. Yes it can become negative as with C-ANAC. I have had six months IV chemo and am now negative. Hope this helps

[PatriciaAnn]

As I understand things, p-ANCA is associated with eg MPA and CSS, whereas c-ANCA is found in eg WG. However, they can be intermixed. Not everyone with vasculitis has positive ANCA. So there's ANCA-associated vasculitis and non-ANCA-associated vasculitis. Confusing isn't it?

There can be false positives and false negatives, so it gets more confusing. The following is taken from the Trust's forthcoming Routemap for Vasculitis -

"Does a negative ANCA mean I don't have vasculitis?

No, some patients can be ANCA positive and others ANCA negative. Individual patients may be positive at one blood test and negative at another. The physician uses the ANCA test as a guide to treatment, along with other test results and by examination and discussion with the patient."

Hope that helps.

[Ziggy in reply to PatriciaAnn]

OK? it is a complicated! I really need to try work closer with the consultant and see what and why he is doing what he is and what is really going on!? as when I see him I rattle off what has happened in the last 2 months, trying to give him as much info as possible BUT probably not giving him time to tell me more about the condition or what I really have! many thanks it has given me an eye opener which is good. Thanks

[Ziggy]

Many thanks Jann I will ask my consultant when i see him next but understand more about it now. Many thanks

[Jann]

Hi, Ziggy

It helps me to make a list of stuff before I go to my visit with the consultant that way I know what is my pressing questions. I take a page for me and a copy for the consultant. I start with results of the last tests and write down the figures he gives me. If you like I can give you a full list of the things I ask for but PatriciaAnn put them in the last newsletter from the Vasculitis Trust. I used that as a basis for the vasculitis related measures ( non absolute as Pat has said) and some extra ones because of the kidney damage. Just going through the results of your last blood test should lead to a discussion with the consultant.

I follow this with a list of current symptoms indicating any that have changed and highlighting any new one. Just bullet points.

I then put a list of questions because there is always something to ask.

Lastly, I list my current meds because if you see someone new/differnet that is the first thing they ask.

By doing this I work out what a want from the visit before I go. However things do change when you review results. I learn a little more each time.

Good luck with your next visit.

[Jim-Bornac]

Otolaryngological Features of ANCA Associated Vasculitis

Abstract

Objective: ANCA-associated vasculitis (AAV) is characterized by systemic necrotizing vasculitis. AAV is composed of proteinase 3 (PR3)-ANCA and myeloperoxidase (MPO)-ANCA. Because infections are a trigger of AAV, the upper airway areas are the favorite sites of AAV. In this study, we compare the otolaryngological features of AAV between patients with PR3-ANCA and patients with MPO-ANCA.

Method: Retrospective case series study. Thirty-four patients enrolled in this study. All patients were diagnosed with AAV at Hokkaido University between 2002 and 2009. We evaluated clinical otologic and rhinologic manifestation of AAV and compared the difference between 2 different ANCA positive patients.

Results: The otologic symptoms were divided into 3 types: chronic otitis media (COM), secretory otitis media (SOM), and sensory nerve hearing loss (SNHL). The COM type was more frequently found in patients with PR3-ANCA (P < .05).

Conclusion: A large difference was observed in the disease spectrum between patients with PR3-ANCA and those with MPO-ANCA. In particular, the discrepancy in the granuloma formation between these 2 ANCAs was thought to be the main reason for these clinical feature differences in the otolaryngological field.

[Jim-Bornac]

Here is the full text

oto.sagepub.com/content/145...

[Rowmarsh]

As far as I am aware ANCA can be positive on several tests and negative on another. ANCA is a marker for your doctor to make a firm assessment as to whether you have a form of vasculitis. In my case, my ANCA has always been negative for 9 years but I was diagnosed with Churg Strauss Syndrome. Unfortunately, my consultant never tested my heart throughout the nine years and it has come to light that I now have cardiomyopathy and severe heart damage, all related to Churg-Strauss and a ANCA negative status.

If you have ANCA positive it is clear that you have a form of vasculitis but the difficult bit for your doctor will be what label it falls under, Churg-Strauss Syndrome or one of the many autoimmune conditions.