ANCA Test

[michael99]

do any of you have a positive ANCA test and still in remission? my ANCA test was 1:320. i have been off the cytoxan/pred for 8 months and currently on imuran. outside of feeling a little tired and a little pain in my hip area, i feel pretty good. Going back to see my doctors next month. any advice? my WG attacked my kidneys and first started feeling slight pain in hip area. Have appt. next month at JHU and my regualr visit with my nephrologist.

[Sangye]

It's quite common for the ANCA to remain (+) even though you're in remission. It isn't an accurate indicator of disease activity in most people.

Who do you see at JHU? My doc there is Phil Seo.

I'm a bit concerned about your hip pain, since you said it was your first symptom.

[Jack]

My ANCA has remained slightly +ve for the past 25 years even though I have been well for much of that time.

[JanW]

I'm positive and in remission.

[elephant]

I'm positive and in remission but my numbers came down 4 points. Yippee

[Geoff]

I cannot get my ANCA level down, currently hovering about the 80 mark (750+ at DX) Looks like I shall be coming off Azathiaprin soon and trying Ritiximub. I was on Cellcept after my initial DX. Frustrated at my growling wegs dog!

[Sangye]

Geoff, are your signs and symptoms improving even though the ANCA remains elevated? I sure hope they aren't basing their treatment decisions just on ANCA.

[JanW]

Put it to you this way, Geoff, my doctor's lab only does ANCA at a positive/negative level, and high, abnormally high. (They do give a number for P3). Mine has always been positive, abnormally high and my treatment has never been based on that (other than initial dx). I sure hope, as Sangye says, they are treating the patient in your case and not the lab values.

For what it's worth, my P3 bounces around in the 60s, and has since my surgery in March, and it's never been one of my doc's concerns.

[Geoff]

I have a roller coaster love affair with Wegs. I am extremley lucky in that my kidney function is very good and my lungs cleared dramatically after my DX and initial hospitalisation; however my ANCA level has been described as recalcigent by Addenbrookes and has stayed around the 100 level. About a year ago they called me in for a course of cyclo when it went up to 175. As I wrote previously, its now about 80 and aprt from some 'dog days' (tiredness mainly) I lead a pretty normal life. I am fortunate? to be approaching 60 but still able to work full time ( I need to as my daughter gets married next year!) Dr Jayne has increased my Azathiaprine from 150 to 250mg in a last throw of the dice to improve my markers but the increased doseage has upset me and I guess I will be looking to start on Ritiximub. I sometimes think I am my own worst enemy as I tend to 'bounce' into the Clinic in a very positive frame of mind. Perhaps I should lay it on a bit thick and moan on my next visit!!

[Jack]

This is a problem that I have when visiting departments where I am not known. My blood results are all over the place and they want to treat me and I then have to refuse treatment and tell them that this is normal for me and that I function OK on these levels and have done so for many years. My vasculitis specialists seem to have more insight and are happy if my results are stable and I am feeling well.