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jeriorleans
11-08-2010, 10:07 AM
So, A.J. went for his appointment in Atlanta. He still has blood in his urine +3 and protein +1. They did a more specific urinalysis and said that normal protein levels were below 200 and his was 160 so he wasn't spilling very much protein. His ANCA was 1/360, the highest it has ever been. Proteinase 3 was 24, higher than last time. THe rheumy consulted with the nephologist there who said it was his opinon it was Wegener's related but at this time no changes in his medication were recommended (methotrexate 25 mg) They are just going to watch his lab work and are going to do it monthly now. He says he feels fine, but 14 year olds will tell you that just so you don't make them rest. My question is, how quickly does renal failure occur? I had previously taken him to a nephologist in New Orleans who seemed to be unconcerned as well.

elephant
11-08-2010, 10:46 AM
How long has AJ been on methotrexate? Sounds like wegeners is active. Kidney damage can go very fast. How about a second opionin?

jeriorleans
11-08-2010, 11:27 AM
He has been on Methotreate since Feb, 2010. Before then it was 4 months of cytoxan. ATlanta was the second opinon. And the nephologist I took him to in New Orleans is the only pediatric nephologist in the area. How fast is fast?

JanW
11-08-2010, 11:55 AM
I don't have kidney problems but will say that my doc considers ANCA and P3 pretty lousy markers past dx. My P3 has never been lower than 60 and I've been symptom free on 17.5 mg of mtx for six months.

elephant
11-08-2010, 11:57 AM
Well my Wegener's specialist has me using dip stick to check my urine weekly, making sure no protein or red blood cells . Every six weeks I get blood work done to check the creatinine and so forth. How is his creatinine, that is a blood test to test the kidney? It all depends on how fast, because if the wegeners is very active, depending where it's going to attack ...the wegeners will do quite a bit of damage to the kidneys.
How do you feel about this nephrologist? Sounds like you are on top of this.

Jack
11-08-2010, 08:08 PM
When first hit by untreated Wegs. I went into renal failure in a period of around 2 weeks. They then managed to recover some of the function, but not enough to sustain my condition so kidney performance began a slow decline that lasted around 9 months. It then dropped like a stone over the space of a few weeks and I went onto dialysis, but this process was fully expected and well monitored.

jeriorleans
11-09-2010, 01:39 AM
His creatine level is only slightly elevated.

elephant
11-09-2010, 04:29 AM
Hopefully it won't rise anymore and stay put. Your doing a great job being on top of your son's care and going for second opinions and asking questions.