Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[HopeinTN]

My doctor decided to post pone the CT scan for 8 weeks. And continuing to taper down on the prednisone. I know they know what they are doing but seeing with my own eyes will make me feel better...I think.

They confirmed that my diagnosis was determined from the open lung biopsy (lobectomy). My ANCA was negative, with a positive MPO and a negative PR3. Still not sure what all thsi means though.

[Thakator]

Hope,
The pain you feel is very likely from the open lung biopsy itself and may not be from granulomas or nodules- - unless, of course, they are unusually large. I had a golfball sized one for awhile and it definately hurt. They took it out during my open lung biopsy and wedge resection. I still have constant pain in the lungs/chest, but it is from the surgery (14 months ago) and this is quite typical for that type of operation. In fact, many people continue with the pain for years and many for ever! Don't want to bum you out, but dem is da facts.

The main thing is that your pain may not imply any granuloma or nodule involvement - - your lungs may be clear even though they hurt. Pain is one thing, your lungs filling up is quite another. And, if you had nodules they may very well have disappeared by now. They can do that, thankfully. Take care, Ron

[HopeinTN]

Ron-

I thought about it possibly being from the surgery as the docs suspect, but I'm also having pain in the lung that I didn't have surgery on, where I also have granulomas. My inital pain didn't have as much to do with size as it did the location of the granulomas. Since the surgery I have had an odd pain with yawning and I'm guessing that may hang around for a while if not forever.

I will lean towards the side of this being surgery related, well, at least until I see otherwise.

Thanks so much for your info and I wish you well!

[Al]

....They confirmed that my diagnosis was determined from the open lung biopsy (lobectomy). My ANCA was negative, with a positive MPO and a negative PR3. Still not sure what all thsi means though.

This doesn't make a lot of sense, Katrina. You can't have both negative ANCA and positive MPO, because "MPO" refers to the ANCA that attacks it! They might have meant "negative C-ANCA, which usually is associated with anti-PR-3 ANCA, but then they should have included "positive P-ANCA. It is somewhat unusual for P-ANCA to be associated with granulomas (about 70-80% of patients with only P-ANCA do not have clear-cut granulomatous formations. (This would describe me.) So I am rather curious what they conclude about you!

Al

[HopeinTN]

I was thinking the same thing so that's why I posted it. I'll respond to them today and make sure I get a better explanation. I'm not sure any of it matters since the diagnosis was correct from the biopsy. Could it be a negative ANCA with negative MPO and positive PR3?

Thanks Al!

[Al]

I was thinking the same thing so that's why I posted it. I'll respond to them today and make sure I get a better explanation. I'm not sure any of it matters since the diagnosis was correct from the biopsy. Could it be a negative ANCA with negative MPO and positive PR3?

No, for the same reason! "PR3" Also refers to the ANCA against it. I agree that you need them to clarify matters.

Al

[HopeinTN]

I'm not sure what to think anymore, but I guess it doesn't matter since it was confirmed with the biopsy. They just confirmed that the above is correct. Hmmm.

[HopeinTN]

Apparently, this can happen and it's rather rare to have a positive MPO and it be confirmed WG thru biopsy of the lung. Again, who knows.

[Al]

Apparently, this can happen and it's rather rare to have a positive MPO and it be confirmed WG thru biopsy of the lung. Again, who knows.

Actually, it is not all that uncommon to be positive MPO and have it confirmed with a lung biopsy. It is more unusual, though, to have both MPO antibodies and granulomas. (MPO is generally P-ANCA, and is highly associated with MPA--Microscopic PolyAngiitis, and somewhat associated with Churg-Strauss Syndrome. Classic WG is more associated with C-ANCA and granulomatous formations.) However, MPA sufferers do regularly have lung lesions, like alveolar hemorrhaging, so it is nothing to sneeze at.

MPO is essentially synonymous with P-ANCA, so I still think your people must have meant that you are C-ANCA negative, not "ANCA negative". In a sense, none of this matters, as the treatment is the same regardless. Still, it drives me nuts that the medicos can get away with such a loose explanation.

Al

[Trudy]

Actually, it is not all that uncommon to be positive MPO and have it confirmed with a lung biopsy. It is more unusual, though, to have both MPO antibodies and granulomas. (MPO is generally P-ANCA, and is highly associated with MPA--Microscopic PolyAngiitis, and somewhat associated with Churg-Strauss Syndrome. Classic WG is more associated with C-ANCA and granulomatous formations.) However, MPA sufferers do regularly have lung lesions, like alveolar hemorrhaging, so it is nothing to sneeze at.

MPO is essentially synonymous with P-ANCA, so I still think your people must have meant that you are C-ANCA negative, not "ANCA negative". In a sense, none of this matters, as the treatment is the same regardless. Still, it drives me nuts that the medicos can get away with such a loose explanation.

Al

Al, I think the more people that are diagnosed with vasculitis makes "the classic WG" less classic. I am positive MPO actually more often than I am PR3 - yet sometimes both are positive. I have lung granuloma, sinus, and kidney involvement. I do not think they should force us into standard boxes; however, for the sake of science it seems they must do that!