P-ANCA positive can it happen by fluke?

[KTWells]

Hello. I was diagnosed as CNSV because of symptoms, a SPECT scan showing reduced blood flow in areas of the brain and a positive P-ANCA. I had chemo and taking mycophanalate. My ANCA is now negative despite ongoing symptoms but I have been told it is now not vasculitis as I'm now ANCA negative. Can a positive result be a fluke?

[Jim-Bornac]

I have CNSV and have never even heard p-anca from any of my doctors. I think even some healty people have positive p-anca?

[Jann]

Hi, I was diagnosed with WG following a renal biopsy. However I am also P-ANAC positive. I understand that P-ANAC ( confusingly this MPO-ANCA) is less comon than a positive C-ANAC (PR3-ANAC). I have also been told a positive P-ANAC is more common in Churg–Strauss syndrome however I do not know if that is true. As Jim has said there can be positive ANAC reading in people without problems. My P-ANAC reading now negative and I aslo have some continuing symptoms. Your vasculitis does not go away it needs continous monitoring. It can become quiet/inactive. Some people call this remission but it does not go away and could unfortunately flare at any time. So I am surprised you have been told it is no longer vasculitis. Perhaps there has been a misunderstanding. I would check if I were you. If you had chemo then I would have throught the was more than one ANAC test so it is unlikely that P-ANAC positive results is a fluke? I suggest you talk it through with someone and perhaps consider seeing a specialist. Regards

[BooBoo39 Volunteer]

Hi, i have CNSV was diagnosed end of 2006 after serious and life threatening issues for the previous 15 months. Then miraculously from summer 2007 i went into what is termed as remission with very low maintenance meds. At the time i was unsure what to expect and my neurologist at the time offered little or no advice. throughout this time some bloods suggested abnormalities when i felt fine and others suggested i was fine when i felt anything but. I even experienced normal bloods ESR CRP neg ANCA yet my lumbar puncture results showed chronic inflammation of the nervous system. I guess the thought here is because no one result on its own suggests vasculitis and from my own experience the doctors who get to know the patient and never dismiss any medical issue no matter how trivial are the medics i feel most credible and willing to trust to treat me. The original neurologist who offered very little by way of advice and made me feel i was wasting his time at appointments through my remission period. Even suggested my CNSV was a one off incident. Sadly in May of this year 4 1/2years on and went into a major flare up which was unresponsive to drugs for a while it was at this frightening time that my son was made aware by the A & E dept at my local hospital that my consultant had infact discharged me some months earlier on the grounds i no longer required his services i was unaware of this. I guess this consultant believed i was cured something i know is not currently a choice medically speaking. I guess the main issue behind all this is there is so little information out there even to the medical profession that so much cannot be understood or decided with any specific tests, each case provided you have a good specialist or team on board should be treated on its individual merit. Learn to take charge of your CNSV and do not be frightened to ask questions, yes you need help from the medics but lets not forget you know how you lived pre-vasculitis don't be pigeon holed by anyone making a snapshot decision on your health especially if you feel they appear not to understand what CNSV is about.I am still in my flare up but it is currently stable with shed loads of meds but i have learnt not to take much notice of my blood results and instead concentrate on how actually feel or what my body is capable of on a daily basis.

Good luck and keep battling.