C-Anca /Anti PR3 Antibodies -Urine Tests accuracy-

[malin]

There are other things that can cause those results, Malin. I think a kidney biopsy is not a bad idea if there's a question about what's happening with your kidneys. They may need to change your Wegs treatment if the kidneys are involved.

Oh, ok really don't want to have to do a biopsy.
Could Weg's still affect your kidneys without any other tests showing up eleveted? All my blood work is fine and the ultrasound I had last year showed nothing even tho my urine had the same levels of blood n protein in it at that time as well.
Weg's is so bloody confusing at times! grrrrrrr!

[Rose]

I had 2 kidney biopsies within about 8 days of each other as in the first they got the wrong kidney tissue,( cortex and it should have been madulla) and so i had to go through the whole procedure again. Physically it was no problem, only slight discomfort when they actually took the biopsy. Psychologically though, it affected be so badly. The previous 10 days in hospital had been horrific with all the test and the possible diagnosis (TB Cancer etc) and I never shed a tear....probably was in shock. Then i was told i had to have a kidney biopsy and I just could not get my head around it and I cried for the first time...and then to be told I had to have another had me in tears again. So, I really understand where you are coming from but if they think the kidneys are involved I guess it has to be done.

[Shannon]

My urine tests have been +2 leukocytes for over two years and no one seems to worried about it. I see some great specialists so I'm not pushing it because the other kidney function tests are all okay. Well, until about a month when pee'd blood but they said that was from a UTI. I just want to make sure this +2 thing isn't a red flag and why they've all decided to just ignore it. I never did get a good explanation.

[Al]

Plus 2 meaning...12 or so? That isn't so bad, Shannon (20 would be high enough for immediatw worry), though the "two years" part concerns me. This would seem to suggest a low level infection or inflammation. And note that 1) the kidneys are part of the UT, and 2) bacterial infections lower in the UT sometimes migrate to the kidneys and cause much damage. You say that your other kidney numbers are normal. Yet, given your history, I would want to eliminate the possibility of "smoldering Wegs".

Al

[aewaustin]

Malin,

A few things... You need to get a 24 urine done. That has been the only easy way to track how Weg's is affecting my kidneys. My dipstick urine will show clear for protein when I am way high for protein in the 24 hour urine. Also you need to go to a kidney doc that can "spin" the urine and then look at it under a microscope within an hour of you giving the sample. By doing this they can tell if the cells are coming through dismorphic (not sure on that exact word) and if there are casts. That is how they confirmed Weg's for me this time without doing a kidney biopsy. This has also been the only way to monitor kidney involvement, along with the 24 hour urine. On the kidney biopsy, I have had two, and how well it goes depends on your doc, but you need to make sure to get meds to relax you going in.

I have significant kidney involvement (but no damage thankfully), two rounds of cytoxan to get it under control, so if you want to message me directly I am more than happy to help answer any other questions.

Anna

[Sangye]

Anna, that's great info. Does your blood work show kidney involvement?

[Al]

A few things... You need to get a 24 urine done. That has been the only easy way to track how Weg's is affecting my kidneys. My dipstick urine will show clear for protein when I am way high for protein in the 24 hour urine. Also you need to go to a kidney doc that can "spin" the urine and then look at it under a microscope within an hour of you giving the sample. By doing this they can tell if the cells are coming through dismorphic (not sure on that exact word) and if there are casts. That is how they confirmed Weg's for me this time without doing a kidney biopsy. This has also been the only way to monitor kidney involvement, along with the 24 hour urine. On the kidney biopsy, I have had two, and how well it goes depends on your doc, but you need to make sure to get meds to relax you going in.

This is good, Anna!

To elaborate, I'm sure you are referring to dysmorphic red blood cells, rather than leukocytes (whlte blood cells), although, under the microscope, badly shaped RBCs can look like WBCs, or even yeast cells. Anyway, dysmorphic RBCs are strong indications of glomerulonephritis, though they don't suggest any specific reason for the inflammation.

Al

[aewaustin]

Sangye - No my kidney issues do not really show up in my blood work. The easy one that is always there is blood in the UA and then when things are bad I have the protein in the 24 hour and the dysmorphic cells/casts under the microscope.

Al - Yep those are the ones

[jola57]

This is such good info for me at this time, I will let my doc know on monday about the 24 hr urine. I am still flying blind with all my docs not knowing wegs and not taking it seriously when I tell them to consult with Mayo. Arrrgh

[pberggren1]

This is such good info for me at this time, I will let my doc know on monday about the 24 hr urine. I am still flying blind with all my docs not knowing wegs and not taking it seriously when I tell them to consult with Mayo. Arrrgh

Are you serious Jolanta? Why wont they consult with the docs you want? That is just insanity.