ANCA - How to decipher (have reviewed multiple threads but still confused)

[Middlesista]

Hi Folks - just came across lab result for ANCA and even after reviewing lots of info in the search function I am not clear. The lab reports states that ANCA is "Positive C ANCA" I believe that from what I have read it is either a P. ANCA and/or C ANCA having somethings to do wth the fluorescent staining. Some folks have listed numbers/values associated with the ANCA - I just have the word positive under the value

also listed is the term Anti-Myeloperoxid and Anti-proteinase 3 and both of these have values associated but no range or normal values? Just wondering if anyone has any thoughts about this particular lab form and what it means other than the obvious positive C- ANCA

[csjknits]

Usually, if the test comes up positive, they then do another test using titers. It is usually written as a ratio (1:20, 1:40, etc). On my labs, normal is written as <1:20. Anything over that would be considered positive/abnormal.
C-ANCA is associated with Anti-proteinase 3 (PR3). I actually don't know what "normal" is for PR3 but I am guessing that normal is 0. Others here will know more.

[Middlesista]

Thanks Csjknits - no ratio on my form. Different labs must do things differently. Standardized would be helpful for sure

[Middlesista]

Me again - I think from the lab that was used for my result that the PR was suppose to < 0.1 or something like that. I read somewhere else < 3.5

just wondering what folks have had for their results?

[Realpro325]

I have read several reports on this subject and asked my Rheumy about it several times and what I understand is that the titers test is the standard and any measure of positive will be an active disease from 1;20 to infinity for C and P ANCA and the PR3 is what shows the level of disease activity. The 1:20 just means that there is no reason to keep testing the C and P ANCA beyond this point if they are active at 1:20 dilute which means they diluted the test sample 20 times greater than the standard and still received a positive reading. If someone is tested at say 1:40 ratio positive it is only because the test was ordered by the doctor that way. The PR3 is what will show the level of activity for those who get this ordered on their test as mine was around 860 this time I think which may show at 8600 on some test or 8.6 on others. There are several ways the lab prints out the test so ask your doctor to explain the result is the only real way to know yours for sure.
Best regards,

James

[debra]

Hi, James... Hope things are good with you... Thank you, for this, good timing ads I was just discussing this with a friend.... James forgive my typo there, I'm not allowed to spell correct, here......... Nice seeing you James...... Deb.

[Realpro325]

hey Deb,
I had to exit for a few minutes. I am not feeling so well. I hope you all understood my post . I don't like to ramble on but I have spent so much time researching why I feel so sick every day that I kinda feel like I should let others know about what I have found. I gotta admit that I am tired , I mean it I am sick of being sick. Sorry for complaints today but it's mot a great day to be me. Don't worry about the typos I spend too much time correcting my own typing. I should just let it ride like you.
James

[Middlesista]

Hi James - thank you for response and sorry you are not feeling too good today and I do so hope that things start to improve. I understand the sick of being sick sentiment. I know this is selfish of me I but I am jealous at times of folks that don't have to deal with this - I know, the green monster - not very helpful or benevolent of me , I should be happy for those with good health - I just want all of us to join that good health club!

i find myself doing lots of research also - trying to learn what I can. So many different experiences and results to treatment - this wait to see what happens can get old quick and I am just one month into this - so much respect for folks who have been doing this for many years

The ANCA - no titer just positive for me. The PR3 was 9.9 and I see yours was 8.6 - I wonder how high folks have had this test be?

thanks again James - feel better soon.

[Birdie]

I am just one month into this - so much respect for folks who have been doing this for many years

It's physically the most sucky at first, until you get it controlled. Emotionally is always up to you, forever. If it's sucky... well... you control that.

[Middlesista]

Wise words Birdie - gotta keep on keeping on....

[debra]

James, my friend, I hear ya! Complaining isn't a bad thing, its what you do after... This is not at all an easy thing... Very hard, but you can do it James... We are all here in this together. James I'm real happy you posted, I worry when you see someone, then you don't... James, this was helpful and I'm glad you took the time to post it... We all learn from oneanother, but can't if the person doesn't post... So thank you...... My sista! Hello... I said before, I'm jealous of anyone who can climb a flight of stairs... If they do this without having to stop, I'm even more so.... Of coarse you want the best for people.... When this jealousy happens, just laugh....... James, hope you keep posting, and I know things will improve for you... They have to, right? Deb.

[debra]

Birdie, hello there!!!!! Short, and to a great point! I like to babble on... Ha ha. Birdie, you're the bomb........ Deb.

[debra]

James, forgot to add, there's nothing wrong with babbling! It gets a bad wrap, but screw it James!!!! Letting it rip, do that too James!!! You may just feel somewhat better..... My point is this James, just screw everything!!! Laughing,but its true, you'll feel a lot better James, then it will work itself out ward........ Me!

[txrepub4God]

My ex-rheumy (just fired her for almost killing me about a month ago) would always order lab tests every month on my PR3, and every few months would test the ANCA panel. I have had one positive cANCA test, which was a year ago - all other ones (probably 4 of them) have said "<1:20", which I believes means negative. However, my PR3s are always high/abnormal. I use a LabCorp location for all my labs, and their "Reference Range" for PR3 is 0.0 - 3.5. My last PR3 in mid-November was 13.4. My PR3 has been high for the past 2 1/2 years - it has never gotten to a normal range.

[Middlesista]

Thanks for sharing your information txrepub4God. I had read about your recent challenges r/t bladder issue and can understand why you needed to switch out from that RA.

I thought if MPO or The PR 3 were positive that made the CANCA positive?

[LisaD1]

thanks. your reply was interesting to me as I have only had two anca pr3 tests and both were pr3 positive but neg for P or C anca both times. My labcorp value for pR3 was 23.6 (normal is below 3.5).

[Middlesista]

Seems my understanding was wrong - CANCA can be negative wth a positive PR3? I saw a video somewhere and it showed how they interacted - need to do more research.

Thanks for sharing Lisa

[debra]

Middlesista, I know, this is something, I really need to study, as well. I understand they are two different sets but what I wasn't aware is you could be negative in one and positive in the other. I thought c anca, no need to check others if that's negative. I just had my c anca, with other labs a few weeks ago, and called the office after the draw, to ask if they would add pr3 ect. My question is this, do some labs automatically test all, with a c anca test? Because all labs are different... It doesn't make much sense to me, if doing a c anca, and yet leave these out? I'm thinking, mine would have been all tested regardless, because mine where going to dr. Niles in Boston, and there experts there... So, hopefully those who know, will chime in here.. Deb.

[Middlesista]

Read somewhere that if CANCA is positive they run the PR3 and MPO - I did a search on ANCA in th forum here and there was some good information. I have seen Dr Niles name - that is good that he will be reviewing your Info Are they sending him other data also?

[debra]

Sista in the middle, hi. What I meant, was if c anca is negative, that they would still test mpo, pr3 ect.? This is what im curious about, since they are two different sets? No, my labs were run up here, unfortunately. But the c anca was sent to Dr. Niles. At least that's what my labs read... So, basically looking to see what to biopsy. There is something in my kidneys, but I dont want to go there. If they find something in my lungs, when I see the pulmonary Dr. I Realy don't want to go there either. What for, if they can just do the gum biopsy, since I have gum involvement... Here's the thing, with me any stress is going to put me way back, and if there still apprehensive to treat, then I will be all the worse, for nothing... I know my body, and stress to my body, or even emottonal , sorry, can't correct that! So, it will effect me, I've seen it! Deb.

[LisaD1]

When I got my tests first time (due to rapid kidney function decline) the entire ANCA panel was ordered - they ran "Anca Screen with MPO and PR3with reflex to anca titer. Results were ancascreen with reflex to titer anca screen negative. Myeloperoxidase antibody - no antibody detected. Proteinase 3 antibody positive as above. Second test was Antiproteinase 3(PR3) positive. C anca negP anca neg; atypical panca neg. ....don't know if this is helpful. I think PR3 is normally run with the anca tests but I don't this for sure.

[LisaD1]

addendum: just read this on the lab printout from lab corps: The presence of positive fluorescence exhibiting P ana or c anca pattern alone is not speifi for diagnosis of WG...decisions should not be based solely on ANCA IFA results. The international ANCA group consensus recommends follow up testing of positive sera with both PR3 and MPO anca enzyme immunoassasys. As many as 5% serum samples are positive only by EIA...

I'll leave this up to all of you to make sense of!

[debra]

Lisa, hi. Thank you for this. Mine was run, similar to that, just slight difference.. why can't all labs run stuff the same? Ya know?Why the different reference ranges,why notjust go even across the board... I still think that some other labs, run c anca alone? Just doesn't make sense, as I've said, not at all.... Lisa, thanks again.... Deb.

[Birdie]

addendum: just read this on the lab printout from lab corps: The presence of positive fluorescence exhibiting P ana or c anca pattern alone is not speifi for diagnosis of WG...decisions should not be based solely on ANCA IFA results. The international ANCA group consensus recommends follow up testing of positive sera with both PR3 and MPO anca enzyme immunoassasys. As many as 5% serum samples are positive only by EIA...

I'll leave this up to all of you to make sense of!

It said... the tests alone prove nothing about Wegener's. It takes more to diagnose. Once you have numerous test results you can use them as a guide because you'll know what tests accurately indicate your condition. You'll learn what tests are relevant for you. I sorta paraphrased their words, but that's the jist of it. :)

[debra]

Birdie! Thank you, I guess for most, this would go without saying, but me, with the whole thalacemmia thing, just throws another curveball into a already complicated mix... Birdie, you're always willing to help, so know its appreciated. Deb.

[Middlesista]

Thanks Lisa!

Deb - i am all set with needle biopsy of lung - not going to ever want that done again - caused and is still causing me so much difficulty. You are correct to be leery of certain biopsies but with that said - go forward as an educated and informed individual and continue to seek health.

[LisaD1]

Thanks Lisa!

Deb - i am all set with needle biopsy of lung - not going to ever want that done again - caused and is still causing me so much difficulty. You are correct to be leery of certain biopsies but with that said - go forward as an educated and informed individual and continue to seek health.

One Rheumatologist said that scopes and biopsies can bring problems - intro of bacteria etc. The other Rheumatologist I see is hot for a bronchoscope (sp?). My kidney biopsy was a bust because they had to use an atrophied kidney (insteadd of my only partly good one) and perhaps could not get proof of Weg due to its condition. My local Rheumatologist says its Weg or some other similar vasculitis and continue accordingly. The other one is more skeptical though he is treating it as wegs LOL and says I am in remission though he doesn't say from what! I think that generally without definitive biopsy proof many are reluctant to diagnose Weg.

[debra]

My sista, in the middle, exactly... I know their minds... And the whole introduction of another major issue, nay, not going for it... Lisa, its nuts isn't it? I mean seriously, when you see a zebra, its a damn zebra, no other animal has these stripes!!! It's not a cow...... Thanks you guys. Sista, eventually something has gotta give... Deb.

[Middlesista]

I wish I had seen this site before I let them do the needle biopsy. Aiso I read with a positive ANCA and also PR3 plus my symptoms most docs do not require a biopsy I am all about your RA Lisa that feels scopes and biopsies cause problems cause he is Right!!! Remission sounds like the a good thing to me - did they treat you for GPA Lisa - it sounds like it is unclear as a diagnosis?

Your welcome Deb - just remember to take care of you!

[txrepub4God]

Debra, I think the doctor has to order a full ANCA panel in order for the PR3 & MPO to be tested. If he just ordered a cANCA, that's all they'll test. They probably wouldn't be able to add-on the test at this point, given the age of the blood sample. I worked in a lab & most add-ons have to be done in 24-48 hours, depending on the test.

[debra]

Terri, hi... Thank you! I had called about an hour after leaving her office. So who knows.. But hey, at least it was done... Terri, take care.... Deb.

[Middlesista]

Deb - be sure to call back for results. It took awhile to get the result but u can always ask them when to expect the result

you have an appt tomorrow?

[debra]

Middlesista, hi. I had already gotton them. I'm sorry, I should have been more clear. These were the labs from my pc doc, back early December... I think it took a little over a week, for canca. It's still not showing... Don't have much confidence in any of these labs, until, I can get more thorough information on how much thalacemmia is influencing things? Holding off on hematologist for now. Then after, these appointments take it from there I guess.... Thanks, my sista in the middle! Hope you're doing better. Deb.

[LisaD1]

I wish I had seen this site before I let them do the needle biopsy. Aiso I read with a positive ANCA and also PR3 plus my symptoms most docs do not require a biopsy I am all about your RA Lisa that feels scopes and biopsies cause problems cause he is Right!!! Remission sounds like the a good thing to me - did they treat you for GPA Lisa - it sounds like it is unclear as a diagnosis?

Your welcome Deb - just remember to take care of you!

Mid Sis - thanks for asking. Yes they treated me for 3 weeks (cytophosamide sp? and prednisone) then the biopsy came back w/ no vasulitis showing so they took me off everything but then I begged to be put back on prednisone low dose and consulted 2 rheumatologists one on the list of weg specialists and they both agreed on the need for the predinsone low dose - meanwhile to the amazement of the nephrologist over the course of a year my kidneys improved significantly though they are still not good but not in danger zone. I get montlhy labs. The general theory is I do have Wegs but w/out positive biopsy the weg specialist won't commit; the local one who is a top rheumatologist himself says it is Wegs...ha ha! The local rheum says if anything changes in my kidney function he will still in immediately and give me more drugs. I have had cat scans of sinus and longs and right now my lungs show signs of unknown infections OR possible granulomotis (sp?) disease...pulmonary dr. is working it up now. What a mess! And this week I got what appears to be a sinus infection or upper resp infection and they put me on cipro today (really scared of this drug!) appreciate someone 2 talk to. thanks again!

[LisaD1]

sorry for all the typos - my laptop keyboard is a little wonky!

[debra]

So, I just looked again at my labs. It says, Anca, so why do some labs call it this, as opposed to Canca? I know ANC is for lupus, oh no, Ana? Now that I'm posting it I'm confused! So why the discrepancy, in the Canca, verses Anca? Anca final serum, #147,510. Whatever this all means. My head spins, with the antibodies. Deb.

[Middlesista]

Lisa - did u have a recent cat scan? How confusing and unsettling for you to have this uncertainty. Sounds like your docs are on top of things - as are you! Take care and that infection should hopefully clear up soon.

[Middlesista]

So, I just looked again at my labs. It says, Anca, so why do some labs call it this, as opposed to Canca? I know ANC is for lupus, oh no, Ana? Now that I'm posting it I'm confused! So why the discrepancy, in the Canca, verses Anca? Anca final serum, #147,510. Whatever this all means. My head spins, with the antibodies. Deb.
I usually see it as CANCA - although I wish I never saw or needed to know about it in the first place

[Middlesista]

appreciate someone 2 talk to. thanks again!

Feel the same way Lisa -

[LisaD1]

Lisa - did u have a recent cat scan? How confusing and unsettling for you to have this uncertainty. Sounds like your docs are on top of things - as are you! Take care and that infection should hopefully clear up soon.

Yes I had sinus cat scan and 2 lung cat scans 6 months a part (last 1 just in Nov)... have all sorts of nodules and something called bronchiectasis (sp?) and asthma but no real change between the 2 lung scans. Thanks for asking!