ANCA now negative

[Linmur1957]

I tested positive p-anca in November 2013. Retested again, and test has come back negative from lab. I don't know what to do now! I have all symptoms of vasculitis small vessels but would say that symptoms are mild but doctor is dismissing this due to negative result. I have just had an endoscopy which confirms gastritis. I have an appointment on Monday with doctor as I have complained on how my test results have been done and handled. Could I still have vasculitis with a follow up negative result? I want something to stop my legs tingling and my feet burning. I am so tired with livedo with red spots on legs, arms and shoulders, these spots do not go away, they die down and flare again. I have been on antihistamine (fexofenadine) for the last 8 years with no reason why. I have chronic sinusitis and constant nasal drip. Could I still have vasculitis? Any help appreciated.

[Kenneth]

I have had GPA since 1994. It took 2 years to diagnose this. In all the tests that were carried out, I only proved positive once with the ANCA test. So as far as I am concerned, it is immaterial that your second test was negative. You can still have vasculitus.

[Tony-LakeDistrict]

From what I understand, you will always have vasculitis, up to now no cure has been found, nor is the cause of the disease known.

the Anca reading is only telling of how active the vasculitis is & should only be one of several pointers to your condition.

Is you Dr a GP or a vasculitis specialist? if the former ,then get referred to a specialist

Tony

[AndrewT]

Dear Linmur1957,

If I were you, easy to say I know, I would ask for a referral to an 'expert' in vasculitis (as suggested above)- they do exist (Dr Jane at Addenbrooke's for example). I suggest this because your symptoms might well be vasculitis- trouble is almost 'anything' MIGHT be vasculitis- the great 'faking it' disease! Various blood tests can give an indication; there are 'markers', in the blood- if your lucky (or indeed UN-lucky). I am having one such test carried out, on my next hospital visit- I'm under Addenbrooke's currently, having had a kidney transplant last July.

The only certainty with vasculitis, or indeed any 'auto-immune condition, is that without the right treatment you will be, at the least, very ill and probably die! Sorry to be so blunt....but it IS the brutal truth! I'm fairly sure that most of the people reading this, assuming that they have vasculitis, have been given days/hours to live.....YEARS ago! I was, am, and always will be grateful to those who both saved, and continue to,save my life. I'm now fifty-two years old and wasn't going to live beyond thirty-five, for 'certain'. (I am aware that this makes me a bit of an old 'crock' but I don't care!)

As I said, to begin with, do get a referral to a specialist and good luck.

My thoughts are with you.

AndrewT

[PMRpro]

Having a negative ANCA doesn't mean you "haven't got anything wrong" - it merely means you haven't got anything that produces a positive ANCA. To my knowledge I've never had a positive ANCA - I have a large vessel vasculitis. Whether the ANCA is positive or negative is just one piece in the jigsaw. If this is your GP - tell him you'd like to see someone else who has some specialist knowledge.