Kidney disease spilling protein question

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Beth75
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Date Joined Jul 2007
Total Posts : 2142
   Posted 6/27/2008 1:16 PM (GMT -7)   
Hello,
 
Jumping over here from the UC board.  I was googling and an old post came up from the lupus board about kidney disease so I thought I might ask a couple of questions, if that is ok?
 
I was dx'd with Minimal Change Disease after a biopsy 09/07 though recently my Nephrologist thinks it could possibly be FSGS b/c I am not responding as well as I should to the meds, which basically means an eventual kidney transplant.
 
My current meds are below and the pred was @ 5mg but my colitis flared up so I had to go up to 40mg a day and from 1.5 weeks ago my colitis is doing much better (thank goodness).
 
I am thinking of pushing to try Cellcept, the neph had mentioned it before and I wanted to see if anyone else had taken Cellcept and what your experiences were?
 
Did any of you not respond well to prednisone/ace inhibitors but someothing else?  If so, what were your meds?
 
I was thinking Tekturna/Lipitor/Pred combo would work really well for me, but I need to discuss getting on Lipitor (I took it once before a few years ago and had normal ankles, so I think that would help).
 
I have also taken lisonopril and simvastatin prior to the Tekturna.
 
my proteins were 4.7 @ dx. then 3.2 then 9.6, then around the 3's went down to 2 and last one was 2.6.  However, my albumin went from 2.4 to 2.8 which is good.
 
TIA!


Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

Post Edited (Beth75) : 6/27/2008 2:23:09 PM (GMT-6)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/27/2008 6:17 PM (GMT -7)   
Hi Beth,

I don't know much about kidney disease but wanted to welcome you to the forum. There are a few knowledgeable kidney members here who will be along in a day or two to help. Some of them aren't on to often . . . so if you don't get the info you are looking for, bump your topic back up until they see it.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 6/28/2008 8:42 AM (GMT -7)   
Beth, I can't help a lot either, but I'll bump your post up so that hopefully some others who have kidney disease can answer some of your questions. I'm sorry you are going through all of this.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 6/28/2008 10:27 AM (GMT -7)   

Hi Beth,

I can't be of much help but wanted to say hi. I have membranous lupus nephritis and was lucky enough to go into remission quickly. The only meds I took were Lipitor and Altace(ace inhibitor). I am currently Stage 3 chronic kidney disease due to permanent damage but my kidneys are holding steady so far. Although your protein level is elevated it sounds much better than 9.6 and your albumin level is at least coming up. It took a long time for my albumin to go back to normal so be patient. Is your nephrologist planning to do another biopsy anytime in the future? I know having kidney issues is scary, especially since you can't tell how well they are functioning. Good luck and I hope changing meds works for you.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2142
   Posted 6/30/2008 7:05 AM (GMT -7)   
Thanks everyone!

Sandy, he says he might do another biopsy in Oct to check for FSGS if I don't go into remission, that will be one year on pred.

It's the not knowing that drives me banana's sometimes, though it sound like all of you are dealing with so much, I really appreciate you taking the time to respond.

I am going to contact my Primary and discuss the best way for me to proceed, I basically want second opinions for both my diseases and just want to make sure I get the best treatment possible (as well all do).

Thanks again and take care~
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

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