Understanding the cANCA test

[Chadwyck]

A friend of mine asked me recently about my ANCA tests in the past. This is a question I kept asking myself but since I started to feel so much better after treatment, I never bothered to ask anyone. I was too happy feeling good than to care anymore. :thumbsup:

If Wegener's is a systemic ANCA associated form of vasculitis, why have every single ANCA test I have done prior to diagnosis up to now come back negative?? The negative test was the reason why my diagnosis was so far delayed causing more damage up to the kidneys. The only thing that test did was give me a false sense of hope, thinking I'm sick with something else. It was suspected when I had the tube inserted in the left tear duct April 2009, the "suspicion" of Wegener's came up on my medical report. That was when I googled it to find out what Wegener's meant...and found every symptom I had. There were more symptoms that I didn't have for sure, but the kidney problem came in 8 months later. Even with renal involvement, the next ANCA test still came back negative. It was when the nasal biopsy was done February 2010 I got the diagnosis so that I could start treatment as soon as possible.

My entire life, I always thought of a negative test as something good... especially if you're checking for a particular infection. That made me say...I might or might not...be infected with Wegener's. But when the test came back negative, I had a sigh of relief for nothing. Only to find out I would still have this deadly disease if I didn't get the diagnosis through another source! It's amazing how the mind works when you lack the education.

So, again, if Wegener's is ANCA associated, why do some come up positive and others like myself come up negative, but yet we both have the same disease?

[renidrag]

I think that there are so many variables to this disease, the medics are searching for something they can hang their hat on. They need to realize, It's not Anca , we already know.
Dale

[Dirty Don]

If anyone had the answer(s) to that question, we most likely wouldn't have WG or it would at least be vaccinated against or somesuch...jus' dreamin'.....

[Chadwyck]

If anyone had the answer(s) to that question, we most likely wouldn't have WG or it would at least be vaccinated against or somesuch...jus' dreamin'.....

OMG.... I was just going to say that! LOL

[renidrag]

I like dreamin'
Dale

[greenjeep]

I was worried that I would relapse and not know it. So I asked my doc. How would I know if I just had a sinus infection or if I was in a relapse. He told me not to worry. That I would have routine bloodwork for rest of my life and if the ANCA became positive again, he would treat it. I later found out that a positive ANCA didn't necessarily mean a relapse either.
So what happened? I relapsed while on Methatrexate and quickly went into renal failure without knowing it.


Sent from my iPhone while driving on the freeway.

[Chadwyck]

I was worried that I would relapse and not know it. So I asked my doc. How would I know if I just had a sinus infection or if I was in a relapse. He told me not to worry. That I would have routine bloodwork for rest of my life and if the ANCA became positive again, he would treat it. I later found out that a positive ANCA didn't necessarily mean a relapse either.
So what happened? I relapsed while on Methatrexate and quickly went into renal failure without knowing it.


Sent from my iPhone while driving on the freeway.

Please tell me you weren't driving to reply... I can wait until you're parked somewhere safe. So you had a negative test all along or positive to negative? I don't understand that part. My biggest question would be, is a positive ANCA patient in more danger than a negative ANCA patient? What I do know for sure is that a positive ANCA gives you your diagnosis and treatment quicker than me but that's all.

[greenjeep]

I had a pos. ANCA, went into remission with a neg. ANCA, then relapsed. My ANCA at the beginning of relapse was partially positive, but I did not feel bad and I was on treatment. But I was in renal failure. I don't understand it either.


Sent from my iPhone while driving on the freeway.

[keegan55]

they did not do the ancs test on me until after the wedge biopsy of lungs it too was negative it is amazing

[Alysia]

I was worried that I would relapse and not know it. So I asked my doc. How would I know if I just had a sinus infection or if I was in a relapse. He told me not to worry. That I would have routine bloodwork for rest of my life and if the ANCA became positive again, he would treat it. I later found out that a positive ANCA didn't necessarily mean a relapse either.
So what happened? I relapsed while on Methatrexate and quickly went into renal failure without knowing it.


maybe this link can help:
Predicting relapse in granulomatosis with polyangiitis: The role of biomarkers - EM|consulte (http://www.em-consulte.com/en/article/797460)

[darl-p]

I will jump in with info passed along by my docs. In the beginning I had my ANCA levels monitored. Now they no longer checked for it and I asked why not. It seems that it is not reliable as a great indicator of inflammation. There does appear to be a correlation between the Erythrocyte Sedimentation Rate or Sed Rate and inflammation when you compare it to the WBC. My docs look at the cReactive Protein (CRP), ESR and the WBC to determine if things are falling apart. Each of these is a marker for inflammation, but any one of them could be out of line and not be conclusive for a problem. My ANCA has been over 100 but the ESR and the CRP were normal. The Sed Rate appears to be the most telling. This is why the docs make the big bucks but it is also why we need to ask the questions.

[chrisTIn@]

I was worried that I would relapse and not know it. So I asked my doc. How would I know if I just had a sinus infection or if I was in a relapse. He told me not to worry. That I would have routine bloodwork for rest of my life and if the ANCA became positive again, he would treat it. I later found out that a positive ANCA didn't necessarily mean a relapse either.
So what happened? I relapsed while on Methatrexate and quickly went into renal failure without knowing it.


Sent from my iPhone while driving on the freeway.

Renal failure can indeed happen very quickly, within one or two weeks.
My husband and I visited a meeting of the Dutch Vasculitis Foundation about a week ago and talked to a lady who was treated for GPA three years ago, went into remission and then got renal problems without knowing it. She now has a renal function of 20 to 30 %. Quite scary, we thought. She looked good now, and felt reasonably good, so she told us. She does a lot of volunteering work for the GPA-foundation, but is sometimes quite tired. She had to quit her 'official' job.

How are you feeling now, Greenjeep?
Please don't answer while driving...:ohmy:

[Alysia]

just one more link: Value of ANCA measurements during remission to predict a relapse of ANCA-associated vasculitis?a meta-analysis (http://rheumatology.oxfordjournals.org/content/51/1/100.short)

[jvilner]

I had psoratic arthritis for 2 years before other symptoms started to appear and then was diagnosed with wegs. I sometimes wonder if I had been checked for wegs then I could have started earlier treatment. Too bad docs don't know abt this disease. (And all my first cousins, 11 of us, have some form of an sutoi


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[jvilner]

Sorry abt that. Post came up twice. Was for another forum


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[mishb]

I will jump in with info passed along by my docs. In the beginning I had my ANCA levels monitored. Now they no longer checked for it and I asked why not. It seems that it is not reliable as a great indicator of inflammation. There does appear to be a correlation between the Erythrocyte Sedimentation Rate or Sed Rate and inflammation when you compare it to the WBC. My docs look at the cReactive Protein (CRP), ESR and the WBC to determine if things are falling apart. Each of these is a marker for inflammation, but any one of them could be out of line and not be conclusive for a problem. My ANCA has been over 100 but the ESR and the CRP were normal. The Sed Rate appears to be the most telling. This is why the docs make the big bucks but it is also why we need to ask the questions.

Same tests my doctors look at - I don't think I have had an Anca test done for possibly 3 years now.

[Alysia]

Same tests my doctors look at - I don't think I have had an Anca test done for possibly 3 years now.
you should do an anca test, according to my wg-doc, every 4 months.

[MaxD]

Chadwyck,

Here is an informative presentation that also addresses your question: http://www.stritch.luc.edu/cme/sites/default/files/cme/11_19_13_hariman.pdf
The short answer is that while high PR3 levels alone are not a strong indicator for the general population, they can (under specific circumstances, such as when PR3 levels go down under treatment) be an early warning sign for individuals. That's why it is so important to have an expert looking at your numbers (at least as a backup to whoever is treating you).

By the way, there is a wealth of valuable information on the vasculitisfoundation.org website for GPA, including talks by leading GPA specialists.

Good luck to you (and to all fellow GPAers)!

[greenjeep]

How are you feeling now, Greenjeep?
Please don't answer while driving...:ohmy:

I am doing better. My nephrologist put me on a Cytoxan infusion regimen that has brought my kidney function back close to normal. My old friend fatigue and wrestling wit the mental ramifications of this disease are my main issues today.


Sent from my iPhone while driving on the freeway.

[greenjeep]

Oh, and not only am I driving and texting, but I'm also eating hot soup and dozing off.


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[chrisTIn@]

I am doing better. My nephrologist put me on a Cytoxan infusion regimen that has brought my kidney function back close to normal. My old friend fatigue and wrestling wit the mental ramifications of this disease are my main issues today.


Sent from my iPhone while driving on the freeway.

Wonderfull that your kidney function is now close to normal. Fatigue and wrestling with mental ramifications... Yeah. I think I know what you mean.
About eating soup, driving and texting: you sure are a multitasker! :wink1:

[greenjeep]

I do what I can ...


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[drz]

Chadwyck,

Here is an informative presentation that also addresses your question: http://www.stritch.luc.edu/cme/sites/default/files/cme/11_19_13_hariman.pdf
The short answer is that while high PR3 levels alone are not a strong indicator for the general population, they can (under specific circumstances, such as when PR3 levels go down under treatment) be an early warning sign for individuals. That's why it is so important to have an expert looking at your numbers (at least as a backup to whoever is treating you).

By the way, there is a wealth of valuable information on the vasculitisfoundation.org website for GPA, including talks by leading GPA specialists.

Good luck to you (and to all fellow GPAers)!

Lot of info in this slide show. It looks like they have a good understanding of how the damage to our body occurs from GPA. The list of researchers on the studies looks like a who's who of good doctors to see for GPA as we will recognize most of the expert names.

I think every doctor treating us should know the contents of this slide show. If your treating or consulting doctor is one of the authors listed on the studies I think we can safely assume they do.