Negative ANCA

[BookNut]

My lab test results ..or at least some of them...have just showed up on my doctor's patient portal. Negative ANCA. I am confused. I THINK the pulmonologist I went to last week said I had a slightly elevated p-anca, and questioned why a diagnosis would be made on the basis of a p-anca with no c-anca results. This negative test does not indicate whether it is a c or a p anca. I am totally confused now. But I go back in about two weeks...so I guess I will find out then. One of these days, I will find out what is wrong with me.... Any insight you can share on c or p ancas would be greatly appreciated. I have been doing research, but am having trouble figuring it out. Thanks!

[Dirty Don]

Either your ANCA tests/results are incomplete, or, as your pulmy suggested, they are inconclusive at best and a dx should not have been made on those alone. Only a biopsy of affected tissues can provide a more definitive answer.

[Alysia]

Hi Jacquie,
there are 4 anca tests to do :
C-ANCA going with PR3 Ab
P-ANCA going with MPO Ab

in my experince & "research" I did, c-anca is positive in WG and sometimes in crohn disease.I dont know much about p-anca ...
I try to copy here something I have about it...

[Alysia]

Antineutrophil cytoplasm antibodies were first described in 1982 and in 1985 were found to have a high degree of association with active WG. These
autoantibodies were described against cytoplasmic constituents of neutrophils and monocytes in sera obtained from patients with Wegner's granulomatosis.
The presence of ANCA is the most important serological test in the diagnosis of
vasculitis. There are two main patterns of ANCA: cytoplasmic (C) and perinuclear
(P). These are defined by their appearance on indirect immunofluorescence using
ethanol fixed neutrophils. There are two types of antigens: Serine protease
(Proteinase 3) and myeloperoxidase (MPO). Infection releases these antigens and autoantibody formation is stimulated. The normal proteinase inhibitors form
complexes with the autoantibodies. The complex of proteinase inhibitor and
autoantibody stimulates T lymphocytes, encourages leucocyte adhesion to the
endothelium and is proteolytic, resulting in damage to surrounding tissue.
Perinuclear-ANCA seems to be associated with renal disease. The main target
antigen of c-ANCA is proteinase 3 (PR3). p-ANCA has a wider range of
specificities but in systemic vasculitis it is usually specific for myeloperoxidase
(MPO). Most patients with Wegener's granulomatosis have anti-PR3 specific
ANCAs, patients with Churg-Strauss syndrome and polyarteritis nodosa have anti-MPO ANCAs, and patients with microscopic polyangiitis have either anti-PR3 or anti-MPO ANCA. If immunofluorescence is used alone, then c-ANCA is more specific than p-ANCA for vasculitis since perinuclear staining is not only produced by antimyeloperoxidase antibodies but also by antinuclear antibodies and antibodies to neutrophil enzymes not associated with vasculitis. All serum that is ANCA positive should therefore be tested in PR3 and MPO ELISA as this greatly increases their specificity.
In a large European trial for the standardisation of ANCA assays, the
specificity of immunofluorescence alone was found to be 97% for c-ANCA and 81% for a p-ANCA pattern. The combination of c-ANCA with anti-PR3 and p-ANCA with anti-MPO both had a specificity of 99%.
However a negative ANCA assay does not exclude the possibility of vasculitis as
there are a few cases of small vessel vasculitides that are ANCA negative. In
these cases a tissue diagnosis of any suspicious lesion may be helpful for a definitive diagnosis. Besides diagnostic screening, the ANCA assay is of value in monitoring the activity of WG, since it correlates well with the disease activity and intercurrent infections do not result in elevation of ANCA levels in WG. It is quite useful in monitoring treatment response. ANCA titres also increase prior to clinical relapses. So far, the presence of ANCA in the context of an infection has only been shown in few recent trials, yet with no clinically apparent manifestation of WG. In diagnosed cases of WG, ESR has shown to be a good prognostic indicator. Their study suggests that ESR correlates better with disease activity than c-ANCA and therefore appears to be a useful prognostic indicator. It is a non-specific test and is not necessarily an ideal single test in the diagnosis of WG but appears to be a useful marker of disease activity. It is important to note that ESR can be analysed in most standard laboratories and is a less expensive test, whereas c-ANCA can only be tested in specialised laboratories. It is useful in the monitoring of treatment response and detection of early recurrences.

[Dirty Don]

May we call you Doc, Alysia?! LOL! Good info!

[BookNut]

Thanks for this information. it is still difficult enough for me to interpret, that I am basically going to have to have my pulmonologist explain it to me. Given the fact that I have had a p-ANCA no higher than 1:40 in the past, and evidently no abnormal reading this time...I think we might be coming closer to ruling out Wegeners. He has briefly mentioned emphysema and bronciecstasis. My problem with that is those diseases have a primary symptom of shortness of breath - which I have experienced only three times for about a week or so each time. Exercise and cold air actually IMPROVE my breathing most of the time. How many 65 year old folks with COPD can walk 3.5 miles at a rate of 1 mile in 18 minutes? Also, I have very few risk factors, having never smoked. I was raised with several people who smoked - but they had all passed away by the time I was in my early twenties and I pretty much left home at age 18. One thing that keeps popping up in my research is fungus infections. We hired someone to renovate a bathroom in our 1800's house a few months before all this started. i really think it could be the mold and fungus that might have been stirred up - since it was basically a tear-down to the studs and rip up the flooring kind of renovation. Still....I feel we might be closing in on the mystery!! It is a good thing to have a doctor who says "thank you for being so interesting". I think it will be a disappointment to him if I turn out to have garden-variety COPD.:bored:

[Alysia]

May we call you Doc, Alysia?! LOL! Good info!

can I tell a joke ?
do you know the difference between doc and God ?
well, God doesnt think he is a doc...

[HopeinTN]

I am Anca negative and diagnosed by lung biopsy!

[BookNut]

can I tell a joke ?
do you know the difference between doc and God ?
well, God doesnt think he is a doc...

LOVE it!! Fortunately I fired the two who felt they were gods!

[BookNut]

WG is so complicated to diagnose. I will be interested to see what my new pulmonologist says is the next step! I am feeling very good right now, so it would seem odd to go for a biopsy...but I would like to know definitively!

[annekat]

The scientific stuff is too intense for me to digest, I'm afraid. I do know that my c-anca, or any other anca, was very low and my non-specialist doc thereby doubted I had WG. I proved him wrong by getting him the results of a septum biopsy I'd gotten while he was on vacation. I also showed him my saddle nose, which had recently developed.

The point being that one can have WG and have a low or negative c-anca. I have heard this many times and am just adding to what has already been said.

Jacquie, it would be great if you don't have Wegs. I just hope that what you do have is nothing too terrible. I find it impressive that you can walk a mile in 18 minutes and a total of 3.5 miles without batting an eye. That does not sound like Wegs to me, unless you were in remission. Best of luck in finding out soon!

[BookNut]

It is definitely a mystery. I see the doc again the end of next week. Maybe I will know more then!

[Alysia]

I find it impressive that you can walk a mile in 18 minutes and a total of 3.5 miles without batting an eye. That does not sound like Wegs to me, unless you were in remission. !

I definitely have wg, which is active, and Im walking every day 30 minutes, about the same rate. I started walking about 6 months after the acute onset (lungs) and because i was desperate and couldnt breath (lungs, bronchi, nose) and my ears were full of fluid. it is one of my medications. Im walking to survive. It is not my body who "makes" me walking but my will.

[annekat]

I definitely have wg, which is active, and Im walking every day 30 minutes, about the same rate. I started walking about 6 months after the acute onset (lungs) and because i was desperate and couldnt breath (lungs, bronchi, nose) and my ears were full of fluid. it is one of my medications. Im walking to survive. It is not my body who "make" me walking but my will. That's great. I'm sure I could walk 30 minutes a day or more, if I just got out there and did it. But my Wegs is not as active as some, though I'm just coming out of a minor flare. I just thought that since Jacquie hasn't even been diagnosed and isn't being treated for it, she might have a lot more trouble doing that if indeed she has Wegs. Of course, everyone is different. Some people can barely walk up a small flight of stairs. Some are just too fatigued to get out and walk like that, as I was when first dx'ed. Now, the fact I don't do it is more that I'm busy and lack the discipline to work it in. I'm sure it would help. Good for you to know that the walking is part of your treatment and that it is a large part of what keeps you going. :thumbup:

[Dirty Don]

Now, the fact I don't do it is more that I'm busy and lack the discipline to work it in. I'm sure it would help.

Whacks Anne on the head...so get out there! NO excuses...same for organizing the house m'dear! LOL! Best to you! Ducks as pottery piece flies by..............

[annekat]

Whacks Anne on the head...so get out there! NO excuses...same for organizing the house m'dear! LOL! Best to you! Ducks as pottery piece flies by.............. Don, I probably will, just not today! I'm literally down to the wire on getting what I need done by tomorrow for first day of Farmer's Market. To go for a walk today would be shooting myself in the foot. I'm only on here now because I'm eating a quick sandwich. Besides, I get a fair amount of exercise just doing what I do. Your last line made me think I should make pottery with ducks on it..... an idea, for sure. And THEN throw it at you!

[BookNut]

You guys are so funny! But seriously. I could not have walked any distance at all during the three flares I had of whatever the heck I have. But once the flares calmed down, after antibiotics and prednisone, I'd get out again. I started about three years ago. my doctor had told me to exercise and take vit. d and calcium to improve my osteoporosis. I HATE going to the gym, and found exercising at home boring. One day I was leaving work and it dawned on me. Why not drop my stuff in the car, put on some walking shoes and .... take a walk?! I LOVED it. Mostly because it was winter and I realized that getting out in the winter did wonders for my mood. Also...it added only a half hour to my day. The timing meant I got a half hour to transition from work to home. It gave me time to relax before jumping into all the home commitments. A lot of it was internalizing the fact that I deserved a half hour that belonged completely to me. Eventually, I worked up to 5 miles, which took me about an hour and a half. Nobody died because dinner was an hour later than it used to be. I am hoping to get back to five miles again. Right now I am THRILLED to be doing 3.5 miles when I can get out. The weather has been less cooperative this year. I won't walk if it is colder than 20 or hotter than 85, or if anything is falling out of the sky:-) Hopefully my lungs will continue to cooperate and I won't be plagued with fatgue and shortness of breathe again. Still wheezing like an accordian if I breathe out deeply...but normal walking kind of breathing is OK right now. Fingers crossed.

Farmers Market....tell me about that Anne. I am interested, having gotten into eating local and/or organic lately.

[annekat]

Jacquie, here's the link to the Olympia Farmers Market: The Farmers Market of Olympia :: Home (http://olympiafarmersmarket.com/) If you click on Vendors at the top you can see the different businesses that are there. Everything, whether farm products or crafts, must be produced in the local area with exception of fruit brought in from the eastern part of the state where it grows better. Pretty much everything is organic. It is also a tourist destination, so if you are ever in this area, make sure you stop by!

[drz]

Jacquie, here's the link to the Olympia Farmers Market: The Farmers Market of Olympia :: Home (http://olympiafarmersmarket.com/) If you click on Vendors at the top you can see the different businesses that are there. Everything, whether farm products or crafts, must be produced in the local area with exception of fruit brought in from the eastern part of the state where it grows better. Pretty much everything is organic. It is also a tourist destination, so if you are ever in this area, make sure you stop by!

Looks pretty big from vendor list and bigger than NYC Union Square market. Anne, are you listed?

[annekat]

Looks pretty big from vendor list and bigger than NYC Union Square market. Anne, are you listed?
Yes, I am Sunrise Beach Pottery, and there is a page on me, which doesn't really show much. It could use some good photos and especially an updated one of me and my work. One staff person is working on the website herself amid her other responsibilities, so it is taking some time to get everything up to speed. But yes, it is a big Market, and people from all over the country remark it is one of the nicest they have ever seen. Unfortunately, not everyone really makes a good living selling there. But some of the businesses do very well. Today was opening day and it was fairly busy, despite the rain. Maybe the economy is finally picking up again.

[BookNut]

Anne,

Just tried to reply and it got zapped into cyberspace. Never click submit till you have copied the text just in case. Anyway - apologies if two posts show up. What I was trying to say was how great the booth looks and how impressed I am with all your work. I will bet that you love it - but wish you didn't have to struggle with WG while you are doing all the work. But that is what keeps folks with health issues going. I understand the work, because my husband and I used to do many antique shows. All the prep, and packing and unpacking. It eventually became too much for me so we quit 2 years before I retired. Now we concentrate on my hubby's passion which is photography. We do only two shows a year ... but there is all the work that no one sees. But it is worth it to both of us to hear the compliments at the shows. Congratulations Anne. It is amazing to be able to do this AND deal with WG!!

[annekat]

Thanks, Jacquie,

It was especially hard the first year I had WG, because I was so sick I had to take the first month and a half off, and thus lost income, of course. When I finally made it back I needed help unloading and could barely walk to and from where we park our cars after unloading. Thing were quite a bit better the second year, and this year should be better yet; even though I'm just coming out of a flare, I still feel better than I did last year at this time. It has always been hard doing the Market because to get the most out of it you need to make a commitment to do all four days that we are open, Thurs.-Sun. That doesn't give me much time to make the product I'm selling. I could hire someone to be there for me part of the time, but can't afford it, plus am reluctant to give that over to another person. I should try to do it, though.

In some ways I'm very lucky to have the Market, because it's local and familiar, and with WG, those two things make it easier than traveling around selling at fairs in different locations. Of course, there are other ways I could sell, like online, or wholesale to stores. In addition, I get an SS disability payment every month, not for a lot, but it helps a lot. I don't have to worry about making too much at the Market to collect disability, because after the cost of doing business, I'm under the limit for that.

I'm glad you like that picture, but it is pretty old and not really good quality.... my pots are better and more interesting now, I think, etc., but true, at first glance it doesn't look bad... I need to get some better pics on there, and actually have some, not so much of me, but of the work. The one for my avatar here would be a start, I guess...