Negative blood work symptoms still there

[maria garcia]

I know this question has been asked before but I couldn't find it in the forum. If blood work comes out negative Panca and MPO negative, in range why does Christina (daughter) still have symptoms of the inflammation (her eyes red and the stuffed nose)?

[Nancy-S]

It seems that most of what I'm reading recently says 70-80% of wgs patients have ANCA. I take that to mean the others will be neg.

I have c-anca pr3, but can't seem to find my place. For the past 48hrs I've had the most excrutiating sinus headache and ringing in my ears. Its deafening. My point is I'm learning this disease has no rhyme or reason, and for sure one size does not fit all.

[Al]

Well, there you go, Maria and Nancy. While WG is generally referred to as an ANCA Associated Vasculitis. the fact is that a small but significant percentage are ANCA negative, yet have all the classic symptoms (though, as I recall, Maria, Christina has, in the past, tested positive of P ANCA), and the reverse is also true: A small but significant percentage are ANCA positive, without other signs of vasculitis. Oh, yes, it would be so much simpler it the disease, or whatever, would just read the definition and go with it. But, no-o-o-o. The Wegs dog doesn't read. Forgot formal definitions: When you hurt, you hurt. And you carry on, as best you can, with a little help from your friends.

Al

[Rose]

I was ANCA positive on diagnosis, negative 3 months into treatment and soon after that, during cyclophosphamide IV tratments I started with a continuous runny nose. My doctors thought allergy, I thought allergy but when I mentioned that I never suffered allergies before the doctor decided to do an ANCA which came back positive to everyone's surprise. For me ANCA seemed to be a reliable indicator of disease activity. My first flare since remission in October 2008 came in November 2011. It started with pain in my foot with roving muscular pains and soon sinus , ear problem and vertigo. An ANCA was done and it came back negative and the other blood work showed no disease activity. My rheumatologist and nephrologist did not think it was a flare because of this but my ENT said that when only the upper repiratory is involved often the ANCA is negative. He is sure it was a flare as I am.

[Al]

Rose, there are plenty of people who have upper airway involvement and are ANCA positive, and some who are ANCA negative. The ANCA test is not a surefire marker for everyone. However, in is unusual for it to be a distinct marker at one time in history, and not a marker later on.

Al

[Rose]

Rose, there are plenty of people who have upper airway involvement and are ANCA positive, and some who are ANCA negative. The ANCA test is not a surefire marker for everyone. However, in is unusual for it to be a distinct marker at one time in history, and not a marker later on.

Yes, Al I also thought that this was unusual. The difference from previous ANCA's was the fact that when it was positive, even just with the runny nose during cyclophosphamide IV, there was kidney deterioration and an increase in inflammatory markers which did not happen in my last flare. I can understand why the doctors said my sinus problems and vertigo problems were not WG related but I know they were. As you said Al, the Wegs dog doesn't read the definition.

[maria garcia]

Al yes Christina was Anca positive and MPO and also biopsy confirmed. In her latest blood work the Anca and MPO was negative. But her symptoms are back. I thought the Anca MPO is what caused the vasculitis. Im still confused but seeing some light behind to darkness. We go tomm. to the rheumy an hopefully they will put her MTX higher or keep her on prednisone again but this time longer than 2 months. I think the MTX is working on the Anca and that has been my wish.

[JanW]

My ANCA has never been negative and yet I've been in a medicated remission for over a year with no symptoms, so that's another data point for you.

[Al]

My ANCA has never been negative and yet I've been in a medicated remission for over a year with no symptoms, so that's another data point for you. Yes, Jan, this also is sometimes the case. One theory behind this is that it takes more than ANCA to produce inflammation, even when they are necessary ingredients (they usually are, but not always). You also need primed neutrophils, and a source of inflammatory cytokines. Another idea is that not all ANCA are active in the disease process. It depends on what IgG subtype they are. But this is not usually tested.

Al

[Al]

Al yes Christina was Anca positive and MPO and also biopsy confirmed. In her latest blood work the Anca and MPO was negative. But her symptoms are back. I thought the Anca MPO is what caused the vasculitis. Im still confused but seeing some light behind to darkness. We go tomm. to the rheumy an hopefully they will put her MTX higher or keep her on prednisone again but this time longer than 2 months. I think the MTX is working on the Anca and that has been my wish.

ANCA, with a little help from other features, do often cause inflammation and disease, Maria. But the disease can be produced in other ways too. It is hard to tell what to blame in Christina's case.

Al

[Chris G]

Al yes Christina was Anca positive and MPO and also biopsy confirmed. In her latest blood work the Anca and MPO was negative. But her symptoms are back. I thought the Anca MPO is what caused the vasculitis. Im still confused but seeing some light behind to darkness. We go tomm. to the rheumy an hopefully they will put her MTX higher or keep her on prednisone again but this time longer than 2 months. I think the MTX is working on the Anca and that has been my wish.

Did they increase her meds Maria?

[maria garcia]

Her MTX was 15 mgs now its 20 mgs. Prednisone had been tapered off and they put her back on it , this time to 7 1/2. Its been a week i was hoping the pred. would start helping her like last time but nothing yet. Hoping the MTX will work this time now thats up to 20. Her blood work was normal and her anca negative for the first time. The Rheumy agrees w this forum and said that didnt mean anything. She is a trooper and hasnt complained yet She has had her symtoms over a year and finally diagnosed 6 months.

[Chris G]

Her MTX was 15 mgs now its 20 mgs. Prednisone had been tapered off and they put her back on it , this time to 7 1/2. Its been a week i was hoping the pred. would start helping her like last time but nothing yet. Hoping the MTX will work this time now thats up to 20. Her blood work was normal and her anca negative for the first time. The Rheumy agrees w this forum and said that didnt mean anything. She is a trooper and hasnt complained yet She has had her symtoms over a year and finally diagnosed 6 months.

I'm glad that they increased her mtx to 20. That might help, but it will take 3-6 weeks to know. 7.5mg pred is a very low dose if its purpose is to control symptoms. It's probably not going to give the results you hope for - especially if she's been back on for a week now, with not result.

Yes, her negative ANCA results are not really indicative of disease activity. I had negative ANCA in October, but still felt rather crappy, and by Dec. 1 felt even crappier. I wonder now, whether my ANCA is currently positive. I'll see my doc next week, but I'm not sure they'll run the ANCA again.

Hang in there!