cAnca and MP3 question

[Middlesista]

Hoping someone has some insight into this new lab result. My initial cAnca and PR3 were both positive when I was diagnosed in November. The new result came back still positive for the ANCA but the PR3 was negative?

Don't know if that is a good thing,not such a good thing or of no consequence? Wondering if anyone has had a similar result

treated with Rituxin, Bactrim and currently titrating Prednisone. Had eye and lung involvement and per my pulm doc and the cat scan I had this week the nodules and cavitary
lesions are no longer showing up!

Still with fatigue and no appetite but vision is back- albeit a bit blurry at times but saw eye doc yesterday and watching eye pressures due to prednisone

Sorry for all the questions but I am learning there are a lot of very smart people wandering around these hallways who are wonderful about helping out us newbies!

thanks!

[Birdie]

The new result came back still positive for the ANCA but the MP3 was negative?

c-ANCA might always be positive and that could make it a good indicator, going up and down a bit with Wegener's activity. I'm not sue what MP3 is, unless we're talking about portable music players. PR3 and MPO are often associated with ANCA.

Fatigue is to be expected, no getting around that until under control and medications change to maintenance, even then... no guarantees about fatigue. But why are you not eating, more accurately, why are you not over eating? Watch your weight, even if you can afford to drop some weight, watch it anyway.


Sorry for all the questions

I'd like to propose a new forum rule making it illegal to apologize for asking questions. That IS the purpose... But my request for a "Damn that sucks" button didn't go anywhere...

[debra]

Sista, still stuck in the middle, hello there... I agree with Birdie, a damn that sucks button would be very cool! Sista, how can one learn without asking questions? I'm very happy for you, regarding you're lungs... So awesome... My sista, remember too, just cause you showed antibodies, and maybe reliable for you, and that's cool, but not always, and not for all... As you know, they can be negative with active disease... Good luck! Deb...

[MaxD]

Middlesista: you may find the following links useful as a start:

PR3 - Clinical: Proteinase 3 Antibodies, IgG, Serum (http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/82965)
How Rituxan Is Thought to Work - Rituxan® (rituximab) (http://www.rituxanforgpampa.com/patient/about-rituxan/work)

Essentially, ANCA are produced from plasma which, in turn, originates from B-cells. Rituxan destroys B cells, so ANCA production stops. The PR3 test measures antibodies that target the proteinase enzyme (C-ANCA does). Typically, the ANCA test is done once, during diagnosis. Once determined to be C-ANCA, after treatment the PR3 levels are tested. As the second link says,
"The levels of PR3 ANCA often decline following successful treatment of patients with WG. Nevertheless, follow-up testing for PR3 ANCA to evaluate clinical status in treated patients should be used with caution as the levels of antibodies may correlate poorly with clinical status in some patients."
If the PR3 levels decline, well and good. But sometimes they may not. So, low levels are good but higher than normal levels are not necessarily bad.

As Birdie also mentioned - did you mean MPO negative perhaps? MPO positive is P-ANCA. C-ANCA is PR3 positive. If you were C-ANCA positive, why are they repeating that? If your PR3 levels are down, that's good news! Ditto for the lung nodules. You're on a good track.

[debra]

Max, this is really awesome! Thank you... Explained simple and to the point... Debra...

[Alysia]

Hi sister. Max explained it perfectly.
C anca is going with PR3. P anca is going with MPo. In my case pr3 is a more delicate indicator for wg activity then C anca. Its the first to become positive if I am off remission. The relationship between C anca and pr3 is similar to the relationship between ESR and CRP. The second indicates more subtle activity.
I would expect C anca to become negative before PR3 as an indication to improvement. But maybe its only in my case.
This way or another, I think that those are great news and that you are kicking away the wg. Keep it going.

[Middlesista]

c-ANCA might always be positive and that could make it a good indicator, going up and down a bit with Wegener's activity. I'm not sue what MP3 is, unless we're talking about portable music players. PR3 and MPO are often associated with ANCA.
...

��. THANKS Birdie - meant PR3. Too funny.

Been watching carbs but actually not hungry - I should be grateful since I have not gained weight but rather lost weight. I am wicked watching carbs due to prednisone but the truth is I am not even tempted and my husband keeps plenty of junk food around like cookies and what nots - he says it is for the grandchildren but that is his story not his reality

ps how does one edit a thread title?

[Middlesista]

Thanks Deb

[Middlesista]

Middlesista: you may find the following links useful as a start:

PR3 - Clinical: Proteinase 3 Antibodies, IgG, Serum (http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/82965)
How Rituxan Is Thought to Work - Rituxan® (rituximab) (http://www.rituxanforgpampa.com/patient/about-rituxan/work)

Essentially, ANCA are produced from plasma which, in turn, originates from B-cells. Rituxan destroys B cells, so ANCA production stops. The PR3 test measures antibodies that target the proteinase enzyme (C-ANCA does). Typically, the ANCA test is done once, during diagnosis. Once determined to be C-ANCA, after treatment the PR3 levels are tested. As the second link says,
"The levels of PR3 ANCA often decline following successful treatment of patients with WG. Nevertheless, follow-up testing for PR3 ANCA to evaluate clinical status in treated patients should be used with caution as the levels of antibodies may correlate poorly with clinical status in some patients."
.

Max - thank you so much for the links and the information. And yes, Birdie is correct I meant PR3.

It it sounds like you can not rely on the PR3 to gauge clinical status if I am reading this correctly since it states that the PR3 is the antibody? I am just wondering why the CANCA is still positive if the PR 3 is negative?

[Middlesista]

I hope so Alysia! Thanks!!!

[Birdie]

��. THANKS Birdie - meant PR3. Too funny.

Been watching carbs but actually not hungry - I should be grateful since I have not gained weight but rather lost weight.

Weight aint your big worry unless it's an extreme change. So lemme say one more thing. It's a good thing to study about lab results but every Wegener's case is different. You'll learn what's relevant in your case... because you're studying it and watching your results. Don't EXPECT something just because it's claimed to be the norm. Wasn't he a guy on Cheers? Sortakinda big wise ass?

[Middlesista]

Weight aint your big worry unless it's an extreme change. So lemme say one more thing. It's a good thing to study about lab results but every Wegener's case is different. You'll learn what's relevant in your case... because you're studying it and watching your results. Don't EXPECT something just because it's claimed to be the norm. Wasn't he a guy on Cheers? Sortakinda big wise ass?

i have learned that every case is different - nothing predictable about this disease

Right Norm - funny thing the folks that hung around Cheers did not sound like they were from Boston or Massachusetts fir that matter.

[Birdie]

folks that hung around Cheers did not sound like they were from Boston or Massachusetts fir that matter.

They drove a car to the bar, instead of a caa to the baa?

[Middlesista]

They drove a car to the bar, instead of a caa to the baa?

Exactly - gotta talk Boston!

[annekat]

I thought I remembered Cliff, the postman, having a Boston or regional accent. I had to google this to get the character's name right.... been a LONG since I watched a rerun. Oh, and Carla, the waitress, didn't she have one, too? The rest all seemed to be from other places.

[Pete]

I thought I remembered Cliff, the postman, having a Boston or regional accent. I had to google this to get the character's name right.... been a LONG since I watched a rerun. Oh, and Carla, the waitress, didn't she have one, too? The rest all seemed to be from other places.

As I recall, Cliff had a very fake Boston accent. Carla was more Brooklyn. The rest didn't seem to have much of an accent.

[Birdie]

As I recall, Cliff had a very fake Boston accent. Carla was more Brooklyn. The rest didn't seem to have much of an accent.

Oooh nooo, look what I started, am I contagious? Best to just shut up before I pollute any more threads. :)

[Middlesista]

I thought I remembered Cliff, the postman, having a Boston or regional accent. I had to google this to get the character's name right.... been a LONG since I watched a rerun. Oh, and Carla, the waitress, didn't she have one, too? The rest all seemed to be from other places.
Hmm - you might be correct Anne - but the authentic accent is hard to miss. I recall watching the Perfect Storm and chucking to myself with the accents.

[Middlesista]

Oooh nooo, look what I started, am I contagious? Best to just shut up before I pollute any more threads. :)

No problem - this type of pollution sometimes gets the brain cells firing on a different subject.

[Titus3:2]

My ANCA had been postive for some years,and I was in remission.I wrote to the NIH,and received this reponse.Some of you have her as a Doctor.Sorry,if this is the wrong place to post it.

[debra]

Wow, Keith thank you for this... I think posting it here is great, as canca is all part of the blood work... Awesome Keith... Deb...

[annekat]

Hmm - you might be correct Anne - but the authentic accent is hard to miss. I recall watching the Perfect Storm and chucking to myself with the accents. I would not know! I thought later that Carla would be more of a NY accent of some sort, like Brooklyn. I am a west coaster who has never even been to the east coast, so I am the last person to ask! Those are the only two strong accents, whether authentic or fake, that I remember on the show. Frasier certainly didn't have one, as he grew up in Seattle, but had more of a hoity-toity accent from going to Ivy League colleges, I guess. Yeah, look what you started, Birdie, and where are you, anyway? And I should Putinize myself right here and now.