new with lupus nephritis

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aerog8r
New Member


Date Joined Jun 2011
Total Posts : 12
   Posted 6/19/2011 3:18 PM (GMT -6)   
Hello all,
 
Just wanted to introduce myself and ask if there's anyone else out there with lupus nephritis... did a search and the nephritis posts seem to be pretty old. 
 
I got sick on Feb 17th this year and it took a month and four doctors for anyone to figure out what was wrong with me... another month for the kidney biopsy and to start Cellcept.  I've been on full dose since May 3... almost off of prednisone... finally back at work full time and mostly just dealing with fatigue and a couple side effects.
 
I have been looking for support groups in the area and found nothing.. would love to hear from someone who's been through this before.  I still have so many questions.
 
Thanks  :))
Christina 
 
 

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 6/19/2011 3:31 PM (GMT -6)   
Hey Christina...I have lupus nephritis. Have had it for 3 years. I am currently functioning in the 20% area. Probably will have another kidney biopsy this coming Thursday or Friday. What type of questions do you have?

Welcome to HW by the way :)! Hope you stick around.
Amy
Lupus Moderater
Cyclosporine, Prednisone, Lisinopril,Norvasc, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 6/20/2011 4:30 PM (GMT -6)   
I have lupus nephritis and my kidneys have returned to 100%.  What questions do you have?  Many of us with lupus have kidney problems whether the diagnosis is SLE or LN. 
 
Bill

aerog8r
New Member


Date Joined Jun 2011
Total Posts : 12
   Posted 6/20/2011 8:03 PM (GMT -6)   
Well I think first - how are you measuring % function?  Is that by eGFR, creatinine, or something else entirely?  Nothing on any of my lab work is a percentage... 
 
Second - what is the length of the average flare - or is there some chance that when I'm done the high dose of cellcept after 6 months, I will still be flaring?
 
And last - for now ;)...  My whole experience of this has made me feel a bit like a three-headed pink zebra.  My rheum and nephro are both very capable but I get the feeling they don't see many like me... they seem to be feeling their way a little bit... and my primary care doc *never* figured out what I had; it was the emergency room doctor who finally did.  If you don't mind sharing...  what have your experiences been like??
 
Thank you both so much!!  It's very comforting to find people who have been through this before.  :)
 
Chris

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 6/20/2011 9:22 PM (GMT -6)   
Few doctors are familiar with lupus or any other AI disease.  I had a team of doctors and there were as many as 3 rheumies and 7 other docs working together on my case.  Even so, each case is different in presentation, how the disease progresses, and how it responds to treatment.  One of the docs was a well known clinical researcher and he was the guru of the team. 
 
I had specialists dealing with each aspect of my illnesses (lupus, polymyositis and scleroderma) but working together as though in a large clinic.  You have to be your own advocate and find doctors, if you can, who have experience treating lupus. 
 
There is no such thing as an average flare.  Each of us is different.
 
Kidney function is measured by eGFR which measures how efficiently the kidneys filter your blood.
 
Bill
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