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New Member

Date Joined May 2012
Total Posts : 3
   Posted 5/6/2012 10:58 PM (GMT -6)   
Hi all,
I'm new to the forum as a poster, but a long-time reader. I'd just like to take the opportunity to join in and become a member.
I was initially diagnosed at 15 with diffuse proliferative glomerularnephritis SLE.  Fortunately, I haven't had a flare since until September 2011-present.
I've been flaring since September with minimal relief.  Luckily (or not so much) I have Kaiser so everything is one-stop shopping, I can see my rheumy, PCP, nephrologist and get my blood drawn all in one location in the same day.  However, I've been having increasingly worse symptoms related to my kidneys and I am feeling frustrated like my rheumy and nephrologist aren't listening! I get up all night to use the restroom and have protein and blood in my urine according to my labs.  They aren't concerned as "its not a significant amount" well the levels keep getting worse despite being on 3 grams CellCept, 10 mg prednisone, and 400 mg plaquenil.  All I want is them to consider a kidney biopsy or at least an imaging study of my kidneys to determine if maybe my kidney disease has progressed to a different stage or maybe I have something going on with my kidneys on top of the lupus.
Needless to say I'm frustrated, this flare has been going on since September. 8 months! I've never had a flare except for my initial diagnosis so I haven't known what to expect and I've had all these symptoms including the malar rash and hand rash I've never experienced so I just hope this ends soon before it gets worse!
Thanks for letting me vent :)

Veteran Member

Date Joined Jun 2005
Total Posts : 541
   Posted 5/7/2012 11:41 AM (GMT -6)   
Hi Stephanie,

I'm sorry you are having such a hard time. Flaring is not fun at all. I don't have any kidney involvement so I can't really tell you what to do except to keep talking to your doctors and let them know how you feel.

Hope you feel better soon.

Mary Ann
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