LUPUS NEPHRITIS

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CALMDOWN
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/4/2008 9:07 PM (GMT -7)   
HELLO, MY DAUGHTER HAS HAD LUPUS SINCE SHE WAS 14 NOW SHE IS 24. THE PROBLEM IS HER KIDNEYS ARE  BEING EFFECTED.
BECAUSE OF HER CLOTTING DISORDER IT IS HARD TO FIND A DOCTOR WHO WILL DO A KIDNEY BIOPSY. THEY ARE WANTING TO PUT HER ON PREDISONE 60MG AND A CHEMOTHERPY DRUG CYT...... DOES ANYONE KNOW A GOOD KY NEPHROLOGY.  HAS ANYONE HAD TO GO THROUGH THIS.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/4/2008 9:17 PM (GMT -7)   
Hello Calmdown,
 
Welcome to the forum.  There will be lots of members to help you with this exact question.  I'm one who doesn't have any kidney involvement, however, I do have the clotting disorder. 
 
She shouldn't have any problem getting a biopsy done.  It's a simple matter of stopping her coumadin (warfarin - is that what she's taking?), and doing Heparin injections for 4 days. (done at home. Really easy, and not painful!).  Then no injection or coumadin on the day of the procedure.  The biopsy is completed, and her normal coumadin doses are restarted that night.  A hopital stay of about 4 days is required to make sure she's theraputic with her coumadin. Then she can go home.
 
That has been my experience with surgery and my blood thinners.  I just had major abdominal surgery a month ago. That is what I had to do and it went off without a hitch! 
 
It's very common and very routine.  If you're having trouble finding a doctor to do this, I'm shocked.
 
I also take prednisone, but have never had Cytoxan.  There are members here who will be able to help you with more of your questions.  If you have any questions about the blood clotting/blood thinners please let me know.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/5/2008 11:17 AM (GMT -7)   
I do have kidney involvement. I have had prednisone and cytoxan. The earlier in the game the cytoxan is started the better the odds are for it arresting the progression of the disease in the kidney. The biopsy is so important to determine exactly where she is at and what treatment is necessary. There is no reason she can't have the biopsy. I also have the clotting disorder and have had 4 biopsies. You need to find a neph. willing to do it. Where are you located? What is her creatinine? Judy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/5/2008 4:18 PM (GMT -7)   
Most common condition is proteinuria which filters out proteins from your blood and can cause edema and some blood in urine.  This condition is usually controlled with an ace inhibitor like lisinopril but a nephrologist will want to do some testing and a kidney biopsey if possible.
 
I had it but meds have controlled it for 3 years and should the rest of my life.
 
Can't recommend any doctors but try to find a university hospital or clinic and ask if their nephrologists have any experience with lupus.  Many will have it and can answer your questions.  Your daughters doctors should be arranging for her to see a specialist.  My doctors brought a nephrologist in very early in the game and I did not have any serious, permanent damage even though my case was very extreme and I nearly died (not because of kidney problems though). 
 
Ask your doctors or find a nephrologist on your own but ask if they are experienced with lupus.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


CALMDOWN
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/5/2008 5:53 PM (GMT -7)   

THANKS FOR ALL THE HELP. CREATININE LEVEL IS (1.2) SHE ALSO GIVE HERSELF A SHOT OF LOVENOX 130MG EVERYDAY, CELLCEPT

AND PLAQUNIL 


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 12/6/2008 9:44 AM (GMT -7)   
Her creatinine is not bad at all. Do you know what her glomerulo filtration rate is (GFR)? With a creatinine of 1.2 i would not panic. She must be spilling protein and that does sometimes warrant aggressive treatment because it damages the glomeruli (tiny filters in the kidneys). I would still find a doc willing to do the biopsy, it pinpoints how extensive the damage is and hat treatment is best. Keep us posted. Judy

lilmiss_33
New Member


Date Joined Nov 2008
Total Posts : 8
   Posted 12/6/2008 3:34 PM (GMT -7)   
I have lupus nephritis and i went into acute kidney failure several years ago. I was then put on 60 mg of prednisone and I was on Cytoxan once a month. My doc said I had about 60% of my kidney function. The Cytozan brought my kidney function back up to 97%! So I feel that those treatments are very good. They Cytoxan was hard to go through at times although I didnt lose my hair.. I felt very weak and I would be very sick following the days after treatment. Looking back it was all worth it. I rather deal with that than dialysis. Keep us updated!

applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 5/1/2009 11:59 AM (GMT -7)   
Hi, I was diagnosed with lupus nephritis when I was 13 and I am now 27. What kinds of meds is she on for lupus? A creatine of 1.2 is very good by "our" standards. normal is around 0.6 and she still has pretty good function at 1.2. When I was diagnosed they started me on 80mg of prednisone and I did two rounds of cytoxin, one in '98 and one in '03.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-tumor cerebri '07, AVN ankles and hips '07, depression '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, melatonin, celexa, pepcid, oxycontin for pain

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