Flair but normal SED/CRP?

[LisaD1]

I have read on here but forget where that for SOME people the PR3 elevates during flares and that a positive C Anca can go back to normal during remissions....It is probably not a reliable indicator in many cases but possibly in some cases...

[LisaD1]

I was never P or C Anca positive. I think relying on PR3, CRP, Sed rate and especially Creatinine is imperative. Right now my PR3 and CRP are a little high but I am not going back on Prednisone, unless absolutely necessary. I will put up with some discomfort. My WG was in lungs only so far.
Dale

were you diagnosed by lung biopsy or clinical manifestations? Thanks!

[LisaD1]

Also, one Rheumatologist claimed that only 5 % of PR3 positive ppl (without C Anca positive) had wegs while another one said PR3 and Canca go together (somehow which I did not exactly understand!)...

It's interesting to me that two ppl on this thread alone are only PR3 positive and not C Anca positive

[darl-p]

I had a discussion with my kidney doc today and mentioned a few things that I take as the beginning of a flare. I had blood tests done last week but since everything has been so good for so long, they reduced the test items. The test did not include the SED or CRP or a few other things. I will go in for another test tomorrow. I rely on the nepheroligst to be my primary guy with the Wegeners since my Remy just wants to try things and see how it works. I have learned in 8 1/2 years that you need to be your own advocate. How you feel is very important with this disease, as the test results are not always a good indicator unless they are really out of line. Stay vigilant.

[drz]

Your physical symptoms and knowledge from your history on how Wegs affects you are usually the best indicators of what is going on with you. How labs correlate with your symptoms is learned from experience and helps you gauge your status in the future. For me the ANCA scores seems to correlate fairly well with my inflammation markers and clinical physical symptoms but each of us have our our own history and patterns and need to learn these along with our health care team to accurately monitor how we are doing and our current treatment needs.

You and your doctor need to learn how Wegs affects you and then treat it accordingly. It is not the same for every one.

For me the hardest part was learning that fluctuations in my inflammation markers or clinical symptoms did not mean I was heading toward or starting a flare. Those increases were just part of my normal pattern of fluctuations and usually resolved themselves in a few weeks. Some times they were caused by infections that had to be treated and then things went back to normal levels. I had many stressful times until I learned these increases in residual symptoms of Wegs did not mean an impending flare. And so far I have avoided needing RTX or any other major med changes.

[Middlesista]

DRZ - that is what I am wondering as far as relying on labs only. Like I mentioned my CRP is creeping back up but all else ok. The only way we knew something was amiss initially was when I lost my vision (since my now permanent hearing loss was not diagnosed correctly since no specific other sx) and then CT showed multiple nodules, etc - plus wt loss. We have not learned yet how a flare will present for me and I don't want to take or increase meds if not really needed. CXR is useless so would need a CT scan again to see if something is going on with lungs but no sx and I have had so many scans in the past 8 months already. My doc has repeated CRP twice and the trend is still upwards and will have another next week

The unknowns and what ifs of this disease are frustrating and concerning. Nothing cut and dried for us!

[drz]

DRZ - that is what I am wondering as far as relying on labs only. Like I mentioned my CRP is creeping back up but all else ok. The only way we knew something was amiss initially was when I lost my vision (since my now permanent hearing loss was not diagnosed correctly since no specific other sx) and then CT showed multiple nodules, etc - plus wt loss. We have not learned yet how a flare will present for me and I don't want to take or increase meds if not really needed. CXR is useless so would need a CT scan again to see if something is going on with lungs but no sx and I have had so many scans in the past 8 months already. My doc has repeated CRP twice and the trend is still upwards and will have another next week

The unknowns and what ifs of this disease are frustrating and concerning. Nothing cut and dried for us!

Yes, the learning process of learning how to live with Wegs can be very stressful, Here is where it is essential to have an experienced doctor to rely on. I had many apprehensive times for a few weeks while these small increases in symptoms and lab signs worked there way through these fluctuations of increases and then back down to lower levels where I felt more comfortable when they called it a drug induced remission. I viewed these times as a mini flare but my doctors still said I was in a drug induced remission and that my increased symptoms were just residual symptoms that vary normally. They define a flare as when the Wegs is active enough to warrant a major change in my meds like doing RTX again.

These times didn't feel good to me and of course the extra stress of worrying about getting real sick again probably only compounded my symptoms of joint pain and and nasal bleeding during sinus rinses and the increased fatigue that caused me to sleep a lot more. But I trusted my treating doctors who were monitoring my condition since they saved my life when I was first diagnosed and treated.

My doctors assured me that since I was still on my maintenance meds that it should be safe for me to wait and see how things went. They also reassured me that if my symptoms got serious they would see me right away and begin any treatment needed which I understood was doing RTX again but they did not want to do this until they thought it was absolutely necessary. They believe there is a risk of the RTX becoming less effective for me if used often.

They do recognize that some people need it regularly for maintenance but hope to avoid that for me as long as it is safe to do so. The Weg experts at Mayo probably developed this protocol or least were involved in early studies to assess the effectiveness of RTX since they are often at the forefront of many medical treatment and assessment procedures so I trust their judgment.

[Christina32]

I've been in a similar situation as of recently. Since diagnosed 3 years ago I've loosely been following my anca out of interest. I was high positive c anca and pr3 at diagnosis. They both went negative and back to positive whenever I relapsed. I felt it changed in sequence with how I felt. Things have been well and I was negative for the past 10 months however a recent blood test showed all is well ( I feel ok too) but my canca and pr3 are high positive again... This was a huge surprise to me as it doesn't follow my historical trend in correlation to how I'm feeling. Not sure how concerned I should be or if something's brewing. Any thoughts or input?
Thanks

[Alysia]

I've been in a similar situation as of recently. Since diagnosed 3 years ago I've loosely been following my anca out of interest. I was high positive c anca and pr3 at diagnosis. They both went negative and back to positive whenever I relapsed. I felt it changed in sequence with how I felt. Things have been well and I was negative for the past 10 months however a recent blood test showed all is well ( I feel ok too) but my canca and pr3 are high positive again... This was a huge surprise to me as it doesn't follow my historical trend in correlation to how I'm feeling. Not sure how concerned I should be or if something's brewing. Any thoughts or input?
Thanks

Hi Christina, for me Pr3 became positive again before other symptoms came, then I was out of remission.. but each one is different... keep an eye on it.... I am glad that you are feeling ok.

[Middlesista]

drz- thanks for the information. My inflammatory markers have been high for decades and the specialists at MGH felt in my case using the pr3 and ANCA was a better gauge as well as symptoms but I understand my RA wanting to be cautious - I just want no organ damage. So many variables - such a crazy disease.