What test results should we be asking for?

[Beth Ann]

My mother was diagnosed in April and she is being treated with ctx (oral) and pred. She has minimal sinus involvement but her kidneys were hit pretty hard. She went to the doctor last week and they said all of her numbers looked good except her creatinine is still high and she has protein in her urine. The doctor called today ecstatic saying that her ANCA levels were within normal range.

I know from reading around on here that those number are not a great indicator of disease activity but what results should we be asking for to get an idea of whats going on?

Thanks!

[elephant]

Is your mom seeing a wegeners specialist? I had kidney failure from WG about 20 years ago and now have a kidney transplant. Need to stay on top of this with a good Nephrologist ( kidney doctor) and Wegener specialist.

[Beth Ann]

She is not seeing a specialist but her nephrologist is brilliant and is treating her for her wegener's. Her creatinine was at 6.2 when he diagnosed her and she is down to a 2.6 so we're hoping it continues to drop.

[Sangye]

I agree that she needs a Wegs specialist. Her doctor should at least be consulting with one. The fact that her doctor is "ecstatic" about a low ANCA--especially while her creatinine and protein are still high-- tells me he might not have the skills that Wegs requires.

Ask them how they're determining her Wegs activity. They should be able to list several parameters, not just ANCA. And they should explain the meaning of each one and your mom's current status.

[Jack]

To be honest, I don't feel the need to ask for any particular test results because I trust my doc to know what he is doing. We usually have a look through the graphical results during my routine visits and he will discuss any anomalies with me. However, I know that the results were anylised when they first became available to him since I have had call backs on several occasions over the years.