positive c-anca with pr3: I have positive c... - Vasculitis UK

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positive c-anca with pr3

sas123 profile image
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I have positive c-anca and pr3 test but i have no symptoms of any vasculitis disorder except dry eyes. What could be the reason of this positive test except vasculitis disorder such as Wegener's granulomatosis?

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sas123 profile image
sas123
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13 Replies
luggsey profile image
luggsey

Can I strongly recommend that until you know what is going on with your health issues that you ensure you keep a very close eye on your kidney function. Vasculitus can damage your kidneys rapidly, a regular urine dip test would be all that's needed.

luggsey profile image
luggsey

Can I strongly recommend that until you know what is going on with your health issues that you ensure you keep a very close eye on your kidney function. Vasculitus can damage your kidneys rapidly, a regular urine dip test would be all that's needed.

PMRpro profile image
PMRpro

It can be there before a vasculitis develops - or be associated with other illnesses:

clinexprheumatol.org/articl...

This study in Sweden came to the conclusion that it may be there very early in the illness, before symptoms appear or the patient may never develop any vasculitic disease. In these patients positive ANCA may be what they call "background noise" if it is borderline or an indicator of inflammation rather than a marker of vasculitic disease if the levels are high.

Really it means "wait and see what happens". Table 1 in the paper tells you what happened to 18 of the patients who had positive c-ANCA and PR3-ANCA - after 7 years the vast majority had no vasculitis although they had had other illnesses which are given in the previous column.

Sima1952 profile image
Sima1952 in reply toPMRpro

PMRpro - would rhis be the same with a postive P-ANCA, mine's always hovered between 15 to 12, been so since the local hospital found it in 2013; l'm under Addenbrookes.

PMRpro profile image
PMRpro in reply toSima1952

An article in the British Medical Journal reports positive P-ANCA results in these illnesses: "The 17 remaining patients with p-ANCAs (13 pure p-ANCAs, four combination of c- and p-ANCAs) suffered from a wide spectrum of diseases: systemic lupus erythematosus, pneumonia (n = 2), emphysema, rheumatoid arthritis, Hashimoto thyroiditis, tuberculosis, bronchiectasias, extrinsic allergic alveolitis, autoimmune haemolytic anaemia, idiopathic lung fibrosis, chronic obstructive lung disease, ankylosing spondylitis, hepatitis B, spinal canal stenosis, unexplained isolated arthralgias."

Only about 1 patient in 5 with a positive P-ANCA was found to have a systemic vasculitis so it isn't particularly predictive of that - it is far more often found in colitis (inflamed colon) but not everyone with a +ve test has colitis. Most of these tests have to be taken together with other tests and the symptoms the patient came complaining about in the first place. Some - not these here necessarily - are mostly negative in a particular disease so if it is positive the chances are you can ignore that possible illness.

Positive doesn't always mean you have something, negative doesn't always mean you don't have something - very confusing I know but that's the way it is. I imagine that if Addenbrookes isn't worried about it - you needn't either! It is this sort of thing that make autoimmune disorders so difficult to diagnose. Plus some were recognised and named from the symptoms many years ago - and now we have such highly specialised technology that it is possible to take one set of symptoms which had one name 50 years ago but now it has been seen there are 3 different sets of blood results. That could mean that it is really 3 different diseases - or does it?

Sima1952 profile image
Sima1952 in reply toPMRpro

Thanks PMR, l actually have COPD so it's probably that that is causing the P-Anca issue. Having said that Addenbrooke's first thought it was Vas' when my eyesight started to fail in my left eye and then my right eye a year later l have had cyclo' plus plasma exchanges. Since then it has been discovered l have an ASA with a PFO which will hopefully be treated soon.

PMRpro profile image
PMRpro in reply toSima1952

Yes - it struck me how many lung conditions were associated with it. Wouldn't it be nice if these things came one at a time! It's bad enough being chronically ill - but when you end up on pred and get "Cushingoid and multimorbidity" on your notes it is a tad depressing!

I assume you mean they are going to close the PFO - have they decided how yet? I also assume you are now on rat poison (aka warfarin) as well as all the rest!

Sima1952 profile image
Sima1952 in reply toPMRpro

They're - Papworth - going to see whether it's possible but won't know until they reach the heart; this is being done via a vien in the leg as a day case; hopefully it won't turn out to be anything more. As far as Warfarin is concerned, l'm not on it yet, l'm on Asprin at the moment, l did ask about the alternatives to Warfarin but NICE won't allow the NHS to use them unless the patient has a reaction to W.

PMRpro profile image
PMRpro in reply toSima1952

I'm on warfarin - I was offered the new fancy stuff a couple of months ago (I don't live in the UK) but declined politely. Warfarin has an antidote if you are in an accident or need sudden surgery. The new fancy stuff doesn't have an antidote - in an emergency I think they have to give blood transfusions (don't quote me on that though). The unique selling point of the new stuff is not having to have frequent INR checks - but it is beginning to be suspected that now it is in common use and lots more people are on it, it might not be such a good idea to never check the INR after all. Which rather negates its USP doesn't it? I'll stick with my monthly checks - I gather the UK is even less often.

Sima1952 profile image
Sima1952 in reply toPMRpro

I'm not sure but l'm sure to find out :-) Thanks for the info on the other types. I much be able to have the antidote if l was ever in an accident or needed a transfusion quickly, as my blood type is AB+

Chris-Bromsgrove profile image
Chris-Bromsgrove in reply toPMRpro

That's an interesting paper, thanks for the link. It does highlight just how difficult vasculitis is to diagnose. It also makes you wonder how long ANCA has been lurking in our immune systems before it triggered vasculitis. I do recall up to two years or so before my diagnosis I experienced a few viruses where I was left feeling fatigued for several weeks after the virus had cleared up (something I had never experienced previously). I put it down at the time to getting older but possibly ANCA starting to have some impact. It was a virus that did finally act as the trigger for my vasculitis.

Chris

PMRpro profile image
PMRpro in reply toChris-Bromsgrove

Not just the vasculitides though is it? Anything autoimmune poses mega problems in terms of diagnosis and it seems that ANCA doesn't necessarily trigger things either. Nor, I suspect, is there a single final trigger for things - it is the proverbial straw that tips the balance and breaks the camel's back and it is the totality rather than the order - if you see what I mean. There's a lot to be said for having chicken-pox...

AndrewT profile image
AndrewT

Yes, speaking as someone who has had damaged kidneys; dialysis and finally a transplant- please DO have your kidneys checked. Please do prove us all completely, and utterly wrong, we won't mind at all!

AndrewT

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