ANCA advice anyone?

[Jules]

Hi All - does anyone have any experience of a change in ANCA results without any other symptoms?

Just had latest bloods back and, for the first time in 2 years, my ANCA has come back positive with a PR3 of 43. Although I know this isn't high compared to many of you who are off the scale, it is a definite swing from the usual 'negative' result I've been used to. I stopped Azathioprine 3-4 months ago (which my rheumy says is the amount of time it would take for my immune system to get back up to speed) but I don't seem to have any other symptoms.

Not sure if this is a warning or if a change in ANCA alone is nothing to be concerned about?

Any thoughts/experiences you have had would, as ever, be much appreciated.

Thanks
Jules

[Dirty Don]

When mine was fluctuating a bit, and not at a serious level, I was just told to watch for symptoms, etc.

[pberggren1]

This happened to me as well this year in January. My PR3 came back 25 and it was usually 1 or 0. So my doc knew I was flaring and called me with the results right away and had already booked the rtx infusions for the next day. I had no symptoms at all to suggest I was flaring. I had a slight increased fatigue over the previous few weeks but that was it. And I knew I was flaring because I got very sick after the first infusion and did not get better until the 4th one.

[MikeG-2012]

My ANCAs have all been off the chart, negative the past 18 months, but I'm I'm in the middle of a pretty good flare up. My inflammation markers have been sky high the past three months. So in my case, ANCAs meant nothing. But sinuses were smoldering in the disease, and I believe were the cause and start of the flare up this time.

MikeG-2012

[Jules]

Thanks, that's interesting to know Phil - have now developed a cough and cold (but chest x-ray last week was clear, so am thinking it probably is just a cold). I wish there was a definitive rule book for this condition! I suspect the rule book would only have one rule . . . . expect the unexpected! :unsure:

[MikeG-2012]

Thanks, that's interesting to know Phil - have now developed a cough and cold (but chest x-ray last week was clear, so am thinking it probably is just a cold). I wish there was a definitive rule book for this condition! I suspect the rule book would only have one rule . . . . expect the unexpected! :unsure:


I think ink the only rule book with this disease is the ones we are writing for ourselves. After reading people's stories here, it seems none of us would fit a textbook case study with identical symptoms and triggers. But hey, we are the 1 in 30,000 percentile. Makes us all unique in so many ways, huh?

MikeG-2012

[Jules]

You're so right - we're all VERY SPECIAL. . . lucky us!:rolleyes1:

[Alysia]

I think ink the only rule book with this disease is the ones we are writing for ourselves. After reading people's stories here, it seems none of us would fit a textbook case study with identical symptoms and triggers. But hey, we are the 1 in 30,000 percentile. Makes us all unique in so many ways, huh?

MikeG-2012

there are also a lot of similarities.
cong for your avatar. nice to see you.

[anulechka]

Hi, I have very similar question to Jules. I got my tests today and I have cANCA at 44.3. I was diagnosed with Wegener exactly 1 year ago. In July cANCA was in the norm. Does it mean I have a relapse? All other tests are good, and I don't have any symptoms. I've just moved to another country and changed my doctor, still not sure if it's a good one.

@Phil - what did you doctor prescribe you that time?

[Jules]

My level has gone up further this week, from 42 to 53 and am on antibiotics for a bout of sinusitus. The antibiotics seem to be working, so my consultants are just keeping an eye on me for a while.

[pberggren1]

Hi, I have very similar question to Jules. I got my tests today and I have cANCA at 44.3. I was diagnosed with Wegener exactly 1 year ago. In July cANCA was in the norm. Does it mean I have a relapse? All other tests are good, and I don't have any symptoms. I've just moved to another country and changed my doctor, still not sure if it's a good one.

@Phil - what did you doctor prescribe you that time?


My doc put me on 4 infusion of RTX.