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

[henrycandy]

Hi All-

Can someone assist - My anti PR3 antibody has reduced from high 107 to 67 -Obviously an improvement- (over 1 month)

Is anybody aware if 67 is normal/still high ?

My kidney specialist is pressing for renal biopsy whilst my rheumatologist would rather wait in view of my present medication 30 mg pred and 15 mg Meth- Pred is being tapered at 5 mg per 2 weeks.

Also how reliable are urine dipsticks as to content of protein in urine. Understand not very reliable

Also is c-anca also name for anti-pr3 antibody ?

I am reluctant for renal biopsey !

Thanks

[JanW]

I can answer the question about PR3 - below 20 is considered normal range at the lab I go to. I went from a high of close to 100 down to 38 now and am completely asymtomatic.

[Al]

Hi All-

Can someone assist - My anti PR3 antibody has reduced from high 107 to 67 -Obviously an improvement- (over 1 month)

Is anybody aware if 67 is normal/still high ?
Somewhat, though the trend is excellent.


My kidney specialist is pressing for renal biopsy whilst my rheumatologist would rather wait in view of my present medication 30 mg pred and 15 mg Meth- Pred is being tapered at 5 mg per 2 weeks. A biopsy is the only way to confirm the diagnosis. The blood test is not sufficient.


Also how reliable are urine dipsticks as to content of protein in urine. Understand not very reliable
For real accuracy, best to have a lab exam (under a microscope).


Also is c-anca also name for anti-pr3 antibody ? Yes.


I am reluctant for renal biopsey ! It is a pain, yes, but see above.

Al

[drz]

I think i was unusual in that I mostly slept through my kidney biopsy. I was pretty exhausted from the transfer to the new hospital. At one point I woke up and asked how it was coming and they said it was done so i don't remember it as very painful or difficult. It is considered the best way to confirm Wegener's disease if it has attacked the kidneys. A biopsy from other sites are often less reliable than a kidney biopsy. It has some risk of bleeding in the kidney which is of course not a good thing but otherwise is a fairly safe procedure.

[malin]

I'm wondering, if I already have a diagnosis but rheumy is suspicius of Wegs now moving into kidneys, do I still need a biospy to confirm this is happening, or is there other ways to check if Weg's is attacking kidneys when I already have a confirmed diagnosis of Wegs in general? :unsure:

[drz]

I'm wondering, if I already have a diagnosis but rheumy is suspicius of Wegs now moving into kidneys, do I still need a biospy to confirm this is happening, or is there other ways to check if Weg's is attacking kidneys when I already have a confirmed diagnosis of Wegs in general? :unsure:

Wouldn't your kidney function tests and urine analysis give you that info on whether your kidneys are going downhill? Are all your test results OK and indicative of good kidney function.

[malin]

Yeah but the only info my Rheumy gave me was that I had +2 of blood and protein in my urine (which is something I've had constantly for about 3 years now) and she's refered my to the renal team (again, been there before for same reason (also had a kidney ultrasound scan which was clear and all they said was all looks ok, come back if you have other problems basically!)

So it's my Rheumy being really cautious which is good I guess but we still don't know if it's just "my normal" level to have +2 blood and protein... :/

[Geoff]

I seem to recal,l when I was admitted into hospital, that a kidney biopsy was the 'clincher' with regards to the diagnosis of my Wegeners.

[Sangye]

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.

[Al]

I think i was unusual in that I mostly slept through my kidney biopsy. I was pretty exhausted from the transfer to the new hospital. At one point I woke up and asked how it was coming and they said it was done so i don't remember it as very painful or difficult. It is considered the best way to confirm Wegener's disease if it has attacked the kidneys. A biopsy from other sites are often less reliable than a kidney biopsy. It has some risk of bleeding in the kidney which is of course not a good thing but otherwise is a fairly safe procedure.I didn't fall asleep--weird, because it was early morning--but I did have the radiologist laughing so hard she nearly missed her mark. The real pain was being confined to the bed for the next 18 hours. You realize how hard it is to tell your body to pee into a bottle while in bed?

Al

[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! :sad:

[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.

[Sangye]

What?? Jolanta, you have to get tough with them. No more asking, start demanding. You're the one who pays for it if the Wegs flares up or isn't properly controlled. You can't afford to lose your body. They can afford to lose their egos. Remind them of that. :mad1:

[Dryhill]

Jolanta, I like to take the easy path and not to make too much fuss, but there cames a time when even I will say enough is enough. Your health and life are far more important than what a few doctors think and as Sangye says you are paying for their lack of treatment.

Jim

[Al]

Jolanta--what Jim and Sangye said....

Al