Does anyone know anything about ANCA-C BLOOD TEST - LUPUS UK

LUPUS UK

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Does anyone know anything about ANCA-C BLOOD TEST

Cyprusgal
Cyprusgal

Hi having more bloods run to rule out other autoimmune disease and ANCA-C Blood test come back negative at 1.80 titer it says positive is over 1.80 can anyone shed any light on this? It seems at the very high end of negative, thanks in advance

16 Replies
oldestnewest

It tests for antibodies that attack neutrophils and are present in vasculitis. Assuming your neutrophil count is normal( part of a CBC) the 1:80 is not at all concerning.

Cyprusgal
Cyprusgal in reply to Roarah

Thanks, the count looks ok 3250 but the neutrophils % is only 22 when the reference is 50 to 70. I am having a problem with my WBC been high and the lyphocyte count been over 11,000 and % being 71 I have got to have a scan this coming week because they keep increasing with each blood count done.

Roarah
Roarah in reply to Cyprusgal

It does sound like you might have something going on with you neutrophils that is why they looked at the ANCA c. It is just a piece of a puzzle and since other pieces are array your titer alone can not rule out anything yet. Good luck getting to the bottom of everything. Are you on any treatments now? They can alter results sometimes too.

Cyprusgal
Cyprusgal in reply to Roarah

Thanks, no not yet she is ruling out all other autoimmune disease before she starts treatment for the Lupus, I had a positive ds-dna and have got loads of symptoms related to lupus 😢 she is being very thorough and running every test going, everything looks like it is coming back negative 😊 which is good but I was wondering about this one because it was just on the level of being positive. I have scans next week to have now which is another piece of the puzzle.

Hidden
Hidden in reply to Roarah

That’s not strictly true, you can have ANCA associated Vasculitis and be ANCA negative. More attention is paid to the presence of MPO or Pr3 antibodies, in conjunction with symptoms. False positive results are possible as well, it’s a complex blood test to interpret.

Cyprusgal
Cyprusgal in reply to Hidden

Thanks it's one shes done along with a long list of others 😊

Boudica1
Boudica1 in reply to Cyprusgal

In my experience C-ANCA on its own is considered a false positive unless you have a PR3 positive result as well. You can have a false negative and still have Vasculitis but the majority of doctors and rheumies seem to forget this due to the so called "gold standard" used for diagnosis which is mainly used for research.

Also like the different types of Lupus there are other types of Vasculitis that there are no blood tests for diagnosing so it's down to biopsies and symptoms. Sadly if you have one of the many doctors that are blinkered by blood tests alone for diagnosing you can have a hard time getting a confirmed diagnosis. Hopefully if you fall into the sero-negative group you should still be treated with the same drugs for the same symptoms just not given a name for what you have.

Good luck and take care.

X

Many tests may be "positive" in that they have a result but the level must be above a certain level to be of concern,

You might find this helpful

labtestsonline.org/tests/an...

Boudica1
Boudica1 in reply to PMRpro

Yes I have found this out as a lot of my test results have come back positive right at the lower end or just under so have been told I'm negative.

I have wondered if they had not changed some of the ranges would I have been given a diagnosis.

Also more importantly what happened to those who were originally diagnosed with being positive only for the range to be decreased so that they fell out of range.

X

PMRpro
PMRpro in reply to Boudica1

These ranges aren't often decreased I think. But they are all part of an overall picture and several just above the borderline may say something more than the odd one.

Boudica1
Boudica1 in reply to PMRpro

I agree it's not often that the range has been altered and only for a few of the tests.

I must admit that I found it strange that I have a mild positive response to RA and it's companion tests but don't have RA in anyway what so ever. A mild positive to dsDNA but too low to be considered and a fluctuating ANA and C-ANCA with no PR3. Positive biopsy for vasculitis and Jessners Lymphocytic infiltration and a inconclusive lip biopsy.

I've about given up on what on earth is going on and wanting a reason for all the different symptoms that appear to have started within months of each other because at least they are being treated. I feel sorry for my poor Rheumy as he's flummoxed with the blood tests.

The only thing that is really hacking me of at the moment is the ectopic beats have gone into overdrive for some obscure reason. I'm definitely collecting a lot of health issues and a lot of meds to go with them and I wasn't happy with the cardiologist adding to them. Still I mustn't complain there aren't worse off than me.

How are you doing these days I hope things are going well for you and under control.

X

Boudica1
Boudica1 in reply to Boudica1

I meant to say there are worse off than me.

Lol. Not sure if that was due to the meds, brain fog or me going dolally.

X

PMRpro
PMRpro in reply to Boudica1

Many many people have positive RF - and no signs of RA. And others have no positive RF but bad RA, called seronegative,

Are the ectopic beats isolated or lasting for long periods? Have you had a recent ECG or Holter monitor? They can progress to become a proper arrythmia so if they are getting worse they do need to be checked out. And an arrythmia can cause all sorts of unpleasant effects. The trouble is getting a cardiologist and a rheumy to talk is next to impossible - as I found to my cost! But events finally overtook it all and now I have a pacemaker - and feel a lot better! Autoimmune disease can lead to damage to the electrical cells that govern heart beat.

Boudica1
Boudica1 in reply to PMRpro

I had a ECG and 24hr holter monitor because this past year the ectopics have been getting very bad, that they have increased to hours and days, the intensity of them are not only uncomfortable but often would be accompanied with an ache or pain. I have SVT+couplets and they think something else is going on. They have put me on Slozem 120 at the moment but I must admit I was not happy with the cardiologist I saw as the clinic was in chaos because the consultant had phoned in sick the day of my appointment so they were running late and trying to cover his patients as well. It was recommended that I had a echocardiogram and bloods but they didn't even do that but told me that if I have another episode to go to A&E and they will check it out. Then wrote the prescription for the Slozem 120 after I was concerned about the other drug they wanted me to have which I knew wasn't suitable for those with asthma and bronchiectasis and had to remind them that I have both and ask them to check that it doesn't counter act with the other meds I'm on.

I was not happy with the appointment and as I have to see GP soon will raise the matter with her she should be able to order the blood tests but I'm not sure about the echo as it was the GP who sent me to cardiology clinic. At the moment I'm not sure if I'm having a flare or if it's side effects of the pills.

X

PMRpro
PMRpro in reply to Boudica1

They never caught the worst of mine - and I was just about to go and request a multi-day external loop monitor, I had the script for it. It was new at our hospital - when you have an episode you press the button and it records the previous several minutes and sends it to the hospital. The other sort were useless as they were fleeting problems and gone by the time it switched on. Then I finally had a syncope and hit my head - and was kept in hospital so they couldn't miss it! But it seems so difficult to get them to think laterally ...

Boudica1
Boudica1 in reply to PMRpro

My holter monitor caught a number of SVTs and Couplets and something else that the analysis was not sure of when the SVT was above 140 as they are trained in Arrythmia's ( excuse spelling).

But for some reason the doctor at the hospital totally ignored the other matter and just kept on about the ectopics and explaining it as if it was a new symptom that I had no idea about ignoring the fact that I've had them for years. What I wanted to know was why this past year has the frequency, intensity and duration have got to the point it is now. Plus to be told next time it happens to go to A&E and they will do the tests that the analyst had asked for.

So it's day 4 on the Calcium Channel Blocker no change in the chest and not sure if I'm having side effects or a flare and asthma playing up.

Guess time will tell.

Take care of yourself.

X

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