Lupus nephritis?

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couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12142
   Posted 6/24/2012 10:36 AM (GMT -6)   
Do any of you have lupus nephritis? When did you develop it? I read where it usually hits during the first 5 years after being diagnosis.
 
What were your signs that you had it? Did you get the high blood pressure?
 
Tell me your story.... confused
Joy

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1434
   Posted 6/24/2012 12:58 PM (GMT -6)   
I have it. I developed it 1 year after my diagnosis and after my symptoms started of lupus. I noticed I had coke/tea colored urine and it was very foamy. Also had swelling in my ankles and feet. I was getting up to go to the bathroom 5-10 times a night ( a sign you are spilling protein in your urine) I did have high BP but didnt think to check it until I went to my rhuemy's office and they did blood work and discovered I was in acute kidney failure.

Usually Lupus Nephritis is known as the silent disease because people don't have symptoms until it gets severe.

Do you think you are developing LN? Why? Trust me, its nothing to mess around with. If you have symptoms you need to call immedatly and get a urninalysis done and a comprehenisve metabolic panel run to check your kidney function.
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12142
   Posted 6/24/2012 1:38 PM (GMT -6)   
I'm not sure. My morning pee is always dark yellow a bubble or two but not foamy. My last urinalysis said 100 on protein but everything else was normal. Also I had a kidney infection during the last test. The doctor was more concerned about the infection.
No middle of the night runs to the bathroom, but legs and feet swell when on them for long time.

I'm supposed to talk to my PCP next week about signing up for disability. I want to discuss with him about the protein spill.

My brother has end stage renal failure from polysistic kidney disease. He spilled protein for years before his kidneys went.
Joy

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1434
   Posted 6/24/2012 3:35 PM (GMT -6)   
dark yellow is a sign or either dehydration or just waiting to go all night. And a bubble or too isnt a problem. I am talking about foamy like you just poured a glass of coke foam.

Like I said, if you are suspicious of kidney problems, get them checked asap. don't wait.
Amy
Lupus Moderater


dialysis from lupus nephritis

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12142
   Posted 6/24/2012 4:27 PM (GMT -6)   
Thanks...
Joy

heathermnrd
New Member


Date Joined Dec 2011
Total Posts : 18
   Posted 6/27/2012 3:47 AM (GMT -6)   
hey Joy I was diagnosed with LN about 2 months ago after having been diagnosed with lupus about a year ago.  My only "symptom" was blood in my urine....my rheumatologist actually thought there was nothing wrong but sent to me a nephrologist just to be safe and the biopsy came back class V membranous lupus nephritis. 
 
If you catch it early its really not awful,  so far I have no kidney damage at all and very little inflammation.  So if you suspect somethings wrong you might as well ask for a referral or atleast a urinalysis and some blood tests. 
Heather.

12/2010- Dx Crohn's Disease
04/2011- SLE.

Currently taking:
-Apriso
-Prednisone (5mg every other day)
-Methotrexate
-Plaquenil
-Folic acid

kmqit
New Member


Date Joined Jul 2012
Total Posts : 7
   Posted 7/3/2012 11:52 AM (GMT -6)   
I have lupus nephritis. This is my second time around. The First time, my ankles and legs were swollen. I was leaking protien quite a bit. other than the swelling, I didn't have any other symptoms. We caught it because my doc does a 24hr. collection every few months. The bio said I was in stage 4 (not good) I did two treaments of chemo, but then for other medical reasons had to stop that and switch to Cellcept. That stuff is wonderful for kidney disease. After 6 months, but kidneys were not leaking protein and I no longer was considered to have kidney disease. I was recently dx again with nephritis, this time stage 3 (better) I am on cellcept again and my protein again is coming down. I tried methotrexate, but it didn't do much for me.

I didn't get nephritis until about 5-6 years after my lupus dx.
Best of luck!

Triple L
New Member


Date Joined Jul 2012
Total Posts : 8
   Posted 7/14/2012 11:31 PM (GMT -6)   
I have had Lupus Nephrits for nine years of the twelve since my diagnosis. I have two types: diffuse proliferative and membraneous nephritis both of these are very aggressive. I have endured the painful kidney biopsy more than I care to remember and intravenous Cytoxan treatment. I had a bad skin reaction to Cell-Cept and have been closely monitoring the issue for years. Many of you have noted most of my known symptoms but the two that are most pronounced for me are ascites and muscle wasting. The constant loss of protein is the most devastating thing for me. I can go from being bloated from the steroid to being atrophied and gaunt in a matter of a few weeks when my kidneys aren't doing well. I'm no doctor but a couple of years ago a friends mother recommended that I try organic cherry juice from Whole Foods. The first time I drank it and extra water every day about two weeks before urinalysis and found that it helps
based on the test result of course. I believe that although the damage is irreversible an improved diet can be somewhat helpful. I drink cherry juice quite a lot and even if it's doing nothing more than masking the protein in my urine that alone is making me feel better, the CVS effect, Lol! In any event, I have escaped dialysis when at the time it seemed certain that the treatment was unavoidable and that's good enough for me. Good Luck and better days!

DQueen
Regular Member


Date Joined Jun 2008
Total Posts : 88
   Posted 7/16/2012 6:37 PM (GMT -6)   
I have lupus nephritis, and this is also my second bout with it. I was first diagnosed with it about 3 years after my lupus diagnosis. I had swelling, blood & protein in my urine, and have had LOTS of blood pressure issues. I have recently been taken off of CellCept (for the second time), am being weaned off of prednisone (for the third time), and am currently on 4 bp meds. I have had 3 kidney biopsies, but have an amazing rheumy & nephrologist, who I have complete faith in keeping me as healthy as possible! The only advice I have for you is to take any of those symptoms very seriously & talk to ur doc asap! Oh & drink LOTS of water & cut back on sodium - these things have helped me drastically! I hope you find some answers soon! Good luck! :)


DQueen






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Post Edited (DQueen) : 7/16/2012 5:42:43 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 12142
   Posted 7/16/2012 7:35 PM (GMT -6)   
I don't have blood pressure issues. I do swell if on my feet for long time. No foamy pee, just a bubble or two. I did have a score of +2 on the protein test but everything else was normal. I had a bad kidney infection during the testing and I found out kidney infections can cause a high protein count.
I'm seeing the rheumy in two weeks and he'll probably do another urinalysis test along with the usual bloodwork.

Kidney problems run ramped in my family....
Joy

shayes71
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/23/2013 7:39 AM (GMT -6)   
Hey Guys, i was diagnosed with lupus in 2004....developed lupus nephritis (stage IV) in 2011. I was on Cellcept and high doses of pred of over a year plus my other lupus meds...didn't help. Had 2 biopsies no change in kidneys...Blood pressure went haywire...(stroke level) had a stroke in 2010 didn't want a repeat so doctors collaborated and decided Cytoxan was the way to go. I am on 3 blood pressure meds..pred..cytoxan once a month and bactrium DS 800mg. Rhuematologist and nephrologist say we will try it for 6 months and then every once evey 3 months... I hope i am better after the 6 months... I am suppose to lose weight but all these..BP meds and steriods are puffing me up. I have not been physically sick...just sore throat, really tired and blotted. Yes, I take a waterpill..but doesn't seem to help.



Shaun 41yrs old

Post Edited (shayes71) : 3/23/2013 7:31:57 AM (GMT-6)

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