Good morning everyone
I have just recieved a call from one of the GP's at my surgery to let me know my ANCA blood test was positive, it read 20. I asked what this meant, the reply was vague; she said this is the reason I have so many infections and the consultant may want to see me...
Please can anyone explain what ANCA is and means, I did look on the web, I'm afraid I'm none the wiser.
(I have GCA and PMR and currently taking 12 and 11.5 Pred alternate days)
Thank you
Marion
Have a look at this link:
Hi Marion,
ANCA are antibodies associated mainly with 3 forms of Vasculitis ( GPA, MPA and EGPA ). There are 2 types, pANCA and cANCA. They are then associated with a raised MPO or PR3.
The problem is that some patients will have a raised ANCA and not have Vasculitis and some patients will have an ANCA associated Vasculitis without a raised ANCA. Other inflamatory diseases can cause then to rise as well, such as inflamatory bowel disease.
Your GP won't have to knowledge or experience to make sense of this. You need to see your Rheumatologist and the questions I would be asking are
Why was my ANCA checked? ( it's a very specialised blood test and not done routinely )
Can you put the result into context for me?
Were you having symptoms that weren't usual for PMR/ GCA ( which are other variants of Vasculitis ) ? A high ANCA doesn't put you at risk of infection.
I hope that helps!
Thank you Keyes, it really does help.
I've had several chest and sinus infections over the last year.
I wake with this horrid "death" like feeling that sweeps through my body at night, sounds dramatic but it's not nice, i mentioned this to my consultant.
I know what you mean by the horrid "death" like feeling. I describe it like having a great heavy blanket of sickness thrown over me, accompanied by a shaft of panic. I am in the dark about the meaning of your blood tests though, glad there is expertise on here for you.
Not mentioned that feeling to anyone other than the consultant, and all of you now 
As I say I felt as if I was being dramatic. Thank you for letting me know you feel the same, somehow makes me feel it could be just part and parcel of the condition. Not very nice is it?
I really don't know how I would be coping without this site and the caring, giving people on this site.
To those experiencing the 'death wave'....I'm another one...omg, it's so comforting to know I'm not going crazy...mine comes early morning as sleep gets lighter I guess and starts in my stomach as a very sickly feeling and then it spreads and the panic feeling comes and I wonder if I'm dying....it's very upsetting.....as I wake up more it seems to pass. I had it years ago too when I was quite ill...wonder what causes it?
Cheers
Hi Marion,
Certainly ANCA associated Vasculitis can cause chest and sinus issues which can present like infections but are actually caused by inflamation of the small blood vessels. There are a few case reports of GCA/GPA crossovers.
Vasculitis UK have a forum on health unlocked and although I " lurk " on here I am involved with Vasculitis UK. We have a helpline which you can phone or e mail to talk things over if that would be helpful. The important thing is seeing a Consultant who can interpret these results and your symptoms correctly, many Rheumy's aren't experienced in diagnosing and managing Vasculitis but there are pockets of excellence up and down the country. Has anyone dipsticked your urine recently to check for blood or protein?
My e mail is lynn@vasculitis.org.uk and the phone number is 0300 365 0075.
Best wishes
Keyes
Thank you Keyes...
Keyes has been here already - thank you Lynn for saving me writing all you have! And I'd already done some homework!
Like her I think that the consultant is very likely to want to see you at some point, not just maybe! They wouldn't have done it without good reason. The autoimmune vasculitides may all present looking a bit like PMR and the differential diagnosis is important. As she also says, the raised ANCA itself is not the reason for you having had a lot of infections - but it may be the indicator as to why you have had them. The chest and sinus problems are not typical of "just" PMR, but they are of other things where ANCA is typically raised. They are usually treated differently - and that is why it matters and we should always see a rheumatologist, even if it is only once, and especially if there is anything out of the ordinary - instead of blaming repeated infections on pred which far too many GPs have a habit of doing. And it is a sign of the importance of describing ALL our symptoms - even when we or the GP don't think they are relevant/important.
Thank you so much for being there.
Now you mention it, the Dr this morning did hint my infections were probably due to the steroids..
I will, in future, mention everything, no matter how dramatic or silly it might sound.
Can I mention now, my feet and lower legs are just so painful as soon as I get into bed, they burn and sting something terrible, this is getting worse.
What difficult and complex conditions these are!
Marion, the feet and lower leg symptoms sound a little like peripheral neuropathy which can be a feature of ANCA associated Vasculitis. It's definitely well worth mentioning.
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