anyone ever had "Nephritic Syndrome".....? ( kidneys)

[Kimbangu]

Hi I am a newcomer, diagnosed in Nov 2009. So far mister Wegener has confined his attentions to my kidneys and hearing. No respiratory involvement....yet......

I had my 3- weekly blast of cyclophosphamide a couple of days ago and took the opportunity to look over my notes while I was in hospital. I noticed that there was a new entry regarding my kidney function. It said I had "Crescentic Nephritis". I have done a bit of research on this condition, I know what it is but I haven't seen any mention of a connection with Wegener's. So is this the normal way that Wegener's attacks the kidneys?

Creatinine 104, yet I have very high protein in urine. Over 3000. I thought this was just a "dipstick " test but apparently they ran a full test and it's 3300. ( milligrams/ltr) It looks like the cyclophosphamide isn't working and if they can't get me into remission soon, they'll switch me to Rituximab.

Has anyone else been down this road?

Rituximab... I always think it sounds like a character from "Star Trek Voyager"..........

[Jack]

I think this is the usual symptom of Wegener's attacking the kidneys, but I'm only familiar with the term "Nephritis". Since the docs are aware of your condition and your results don't look too bad at the moment, I would think they will be able to keep it in check. In my own case, my kidneys were well gone by the time I was diagnosed so it was all a bit too late.
You are in the very early days of treatment at the moment so there is still plenty of things to be tried. It took me 5 years to gain remission and that was with the help of a vasculitis research group, but a lot has been learned since those days.

[elephant]

I had silent kidney damage, but actually I did complain of lower back pain. I was a track star back in high school at age 14 and the coaches thought I pulled a muscle back there so they were training me with weights to keep me strong. Well just like Jack it was too late and I ended up eventually getting a kidney transplant. The diagnosis they made was rapidly progressive glomerulonephritis. Back then they did not diagnosis me with WG, they knew whatever I had was autoimmune....

[moyan]

Thanks all, another thing that should be done regularly! The wanted urinesample 2 years ago when dx and since none! Should I ask all 7 docs to require it?

[JanW]

My rheumo takes my urine every other week and says he will at least for a year. Only time they won't do it is if a woman is menstruating.

[Sangye]

Moyan, I don't have kidney involvement, but my Wegs doc gets a urine sample every time I see him (every 3 months). When I was on ctx, he ordered one every 2 weeks. One doc should be overseeing all your care (a rheumy) and ordering regular urine samples. You don't need every doc to do it, since they can all get the reports.

Kimbangu, "Crescentic Nephritis" is Wegs. "Nephritis" means kidney inflammation. "Nephritic" is the adjective to describe an inflamed kidney.

Like Arthritis and Arthritic: "I have arthritis, so my joints are arthritic."

[moyan]

Thanks Sangye, I have come to understand that the doc I have had for 2 years is not capable of keeping track of what goes on with me! Hence I am looking for a more allround doc. Seeing a rheumo on Wed and have high hopes.

[Sangye]

I hope it goes well, Moyan. You really deserve to have a great doc.

[elephant]

Wish you well and good luck Moyan. You deserve the best!

[moyan]

Sometimes I get so crossed: Nobody told me at the hospital to drink a lot of water and why!! A nurse told me the pills were chemo, but what did I know! Only when I bought the first at the pharmacy did I know, but still not why.