What does your doc do for rises in ANCA/PR3?

[csjknits]

Trying to learn more about what happens when ANCA and PR3 creep up.
After hospitalization in April/May and 3 months cytoxan, my ANCA was briefly negative. ANCA and PR3 crept up a little after that, and my doc (nephrologist) raised my prednisone. ANCA went slightly lower but is now high again, and PR3 is over 100.
My doc, whom I trust greatly, has always maintained that ANCA alone isn't enough to treat, but he has some concern that the ANCA and PR3 are rising. I don't really have any other symptoms going on, although I'm getting my eyes checked next week and if ESR goes up more (it's also up) I will have my ENT do a biopsy as I always have general sinus stuff going on it seems.
At my doc's request I went to a new rheumatologist today. She said she doesn't treat ANCA or PR3 changes, only symptoms. It was her suggestion to get the ears and eyes checked. I have been on azathioprine for about 5 weeks, and she also said that it's possible it just hasn't kicked in yet.

I like what she said, that monitoring ANCA only causes anxiety for patients (and I am living proof of that!). That said, I don't love the idea of waiting to see what happens.

What has your experience been?

[Pete]

My doc doesn't track either ANCA. My monthly labs are complete blood count, comprehensive metabolic panel, sed rate, C-reactive protein, and urinalysis. We track creatinine within the cmp for kidney function. Creatinine runs slightly above normal, but it's stable, so we recognize that there's some kidney damage, but we don't worry about it.

[Birdie]

What has your experience been?

My experience indicates the a rise in c-ANCA and PR3 is cause for concern. But... you just switched treatment to azathioprine. I'd listen to the doctor and not worry about it in the short term. Get blood work done as often as you can and watch it closely.

[mishb]

I have only had my ANCA done twice. Once when I was in the process of being diagnosed by an ENT, and the 2nd time when ENT referred me to a major hospital and Rheumatology clinic, for treatment.
This all happened in 2010. I have not had them done since.

My Rheumy says that they only rely on symptoms, but also like to keep an eye on inflammation, liver and kidneys.

I agree, that if you are still feeling fine, then you shouldn't worry about the ANCA, but keep your eyes on the ESR, CRP, LFT's and the kidney stuff

[csjknits]

Thanks for the comments!
I still get blood work taken every 2 weeks and it is the usual--CBC, CMP and urinalysis. I have had CRP and ESR on occasion but not regularly. I like the idea of doing those monthly.
The ANCA was taken at the time of switching from cytoxan to azathioprine. It is not taken as a general monitoring tool.
thanks again!

[Alysia]

for me that anca is an indication for smoldering or flaring. also pr3 which is more sensitive. I check them every 4 months. usually if they are up it comes with other symptoms. especially nose bleeding and red painful joints. btw, nose biopsy can be false negative (negative for wg while there is wg activity). I had it twice false negative at the beginning.

[whatthewhat]

For our daughter (pediatric WGs) a rise in PR3 signifies, as I put it, that the beast has opened its eyes, but not necessarily prowling yet. Three months in a row her PR3 has risen; the eyes are widening, and since the beast has sprung into attack before, we know it can happen fast in her body and so she's getting Rituxan on Friday. We want to swat the beast back to sleep before it does any damage. She was diagnosed two and a half years ago, so we know what the patterns have been with her lab work & disease activity. This disease seems to have individualized ways it manifests, to some degree.

I don't know whether kidney damage doesn't happen as much in adult weggies or whether adults aren't diagnosed as readily when their kidneys are failing, but with pediatric WG the kidneys can go very very fast, like in 10 days fast. So once our daughter's lab work would show falling red blood cell count or kidney number elevation, it's past time for action. I think this is not how it works with adults as much. I think adults have more lead time for reacting to numbers, not unlimited time, for sure, but more time than kids.

[csjknits]

I am still learning about what my patterns might be as I am only seven months from being diagnosed. That said, when it was not feeling well in April my GP ordered a CMP that showed creatinine of 1.7--of course abnormal. I think the goal was to keep an eye on things. Ten days later I was in hospital with creatinine of 7.8. So far my kidneys have remained wonderfully stable and the constant blood work on that front helps keep worries low(er). It is interesting for me to hear about other people's experiences. Were it not for this site, for example, I would not have known about the testing needed for azathioprine. So thanks!!

[woz]

I was also on cytoxan for 3 months plus pred, my anca and Pr3 went down to zero, changed to aza, and then tapered my pred down to nil over the next 3 months, about a year later my anca went up and my Pr3 went to anywhere from 9 to 15, my rhuemy has tried a short stint on pred which didn't work, then raisied my aza over the last year, all to no avail, my bloodwork is always great, and I feel good except for some aches and pain, would like to get my Pr3 back to where it was, but haven't found the magic pill to do that as yet. If you feel good, that's a good sign, go with it, make sure you do regular blood work, to keep it in check.

All the best.

Regards Woz...

[drz]

So far my experience is they increase my regular lab work to check for blood in urine, increased inflammation, and ask me to contact them immediately if new symptoms or residual ones increase significantly. I add nasal steroid spray for sinus infections and increase my nasal rinses. Usually I also get an extra antibiotic too. And then we patiently wait for things to improve with understanding that we will quickly start RTX if things really start getting a lot worse. So far RTX hasn't been needed since initial treatment.

[crowneagle]

My doc doesn't track either ANCA. My monthly labs are complete blood count, comprehensive metabolic panel, sed rate, C-reactive protein, and urinalysis. We track creatinine within the cmp for kidney function. Creatinine runs slightly above normal, but it's stable, so we recognize that there's some kidney damage, but we don't worry about it.

Ditto for me. Have you tested positive for MPO or PR3?

[txrepub4God]

My ANCAs have been checked probably 5 times in the past 2 years - but I requested (and my rheumy agreed) to have my PR3s checked every single month with all my other labs. I think watching the PR3 helps both you and the rheumy know if your treatment plan is working or not and if your Wegs is still active (and how active it is). My cANCA was only positive one time, about a year ago before I was diagnosed. However, my PR3s are ALWAYS abnormally high, and even though they came down some on Cytoxan, they never got into a normal range. I was just taken off Cytoxan after 5-1/2 months on it, although she was going to take me off at 6 months anyway. It ended up causing severe internal bleeding from my bladder (called hemorrhagic cystitis) and I was hospitalized for 11 days, given 6 units of blood & platelets, got sepsis, was in the ICU, and nearly left to meet God. Let's just say I'm never taking Cytoxan ever again. LOL

I personally like to watch my PR3s for my own peace of mind and knowledge. At the moment I am switching rheumys and am not on any Wegs treatment except for a low dose of prednisone, since my new hematologist is trying to get my blood cell counts stabilized. My hemoglobin and hematocrit, as well as white blood cells and platelets, are now falling again since being out of the hospital for 2 weeks. I might have to go back next week for another transfusion.

[csjknits]

Thanks for the additional responses.
My PR3 has been positive since I was diagnosed. It was very high at diagnosis, got almost to zero (I think 6.6 at lowest?) and is now over 120. I guess the question is what one does with this knowledge. Everything else is good in terms of lab work. Creatinine has remained stable since July with one small blip that was likely either a small cold or dehydration (it went right back two days later). My CRP is normal and has been for a long time. My SED rate is up now, between 40 and 50, and rheumatologist wants eyes and ears checked (eyes are fine, ears will be checked this week). White blood cell count has been the same for a long time. Urinalysis is vastly improved and now shows almost no RBCs and the same proteinuria that has always been there (and my doc says this could be true for a while, he's not worried). I am on azathioprine now and I guess the only thing that could change would be to switch to Rituxan, which is possible but I"m not sure necessary at the moment.
I actually feel pretty good, minus joint pain. I do not want to go any higher on my prednisone, even though I know this would get rid of the joint pain.
I'm seeing my new rheumatologist in Jan and my WG doc/nephrologist in Feb. Going to ENT this week to check sinuses/ears/nose.
I am returning to the idea of going to Cleveland Clinic, which I had put aside for a while. Mostly just to see what their opinion is, as, like I said, I feel pretty good.
I guess what I am mostly curious about is how much people's PR3 fluctuates and what your doc does when it is high.

[gilders]

Azathioprine can take quite sometime, but has usually worked very well for me.
So as your not feeling too bad, I'd wait for the Aza to kick in before looking at more powerful treatment.

[txrepub4God]

I guess what I am mostly curious about is how much people's PR3 fluctuates and what your doc does when it is high.

My rheumatologist didn't change anything when she saw that my PR3 wasn't going down or getting anywhere close to a normal level. She just used the monthly PR3 test to see how effective the current treatment plan was, which for me was Cytoxan 150 mg daily, 10 mg prednisone daily, and 400 mg Bactrim daily. I think she planned to have me on Cytoxan for 6 months all along and that's it - she was going to switch me to Imuran or CellCept after 6 months. However, I got so ill on the Cytoxan that we stopped it a few weeks early and right now I'm not on anything except prednisone until I find a new rheumatologist.