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Kidney Involvement Questions

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Posted 1/13/2010 9:46 PM (GMT 0)
What can everyone tell me about kidney involvement? I am asking because my kidney function has significantly decreased since December. I got the call today. I see the kideny specialist Monday. I am currently on the phone with my rheumy's office. I wish my old rheumy hadn't moved away, this guy has only seen me once and now I have a crisis. darn I am so sick of lupus. Kidney involvement killed my great grandmother and great aunt.
Posted 1/13/2010 10:38 PM (GMT 0)
Hey Redrose...Sorry you are having problems with your kidneys, but it sounds like they caught it extremly early which is great news. In most cases Kidney problems are treated with Cellcept, Imuran, or Cytoxan. and if you are spilling protein they will usually put you on lisinopril. i do know for Lupus nephritis, Cellcept has become the drug of choice over Cytoxan. Cellcept has less side effects than Cytoxan (which is IV Chemo) and generally better tolerated. Do you know what your creatinine, BUN, and GFR is? Are you spilling any protein?

What questions do you have? I know a few others on here have lupus nephritis and will probably pop in later.
Posted 1/13/2010 11:31 PM (GMT 0)
Hey Redrose! I have had major kidney involvement for over ten years. In recent years, the treatments have improved and people are having much better outcomes. So, even though it's scarey, don't panic or think the worst.

The treatment may at times seem drastic and aggressive because usually kidney involvement is fairly symptomless. Be careful to follow any protocal they put you on meticulously because it will make all the difference in the years ahead.

If you are spilling protein and your function is declining; don't be surprised if they want to do a kidney biopsy. It's pretty much the standard and quite necessary. It sounds much worse than it actually is. Please keep us informed. Several of us are all too familiar with kidney issues and will be more than happy to answer any questions we can. Take care Judy
Posted 1/13/2010 11:58 PM (GMT 0)
So Sorry, Redrose.
Posted 1/14/2010 6:51 PM (GMT 0)
Rose,
How are you doing?
Posted 1/14/2010 7:01 PM (GMT 0)
I have a cold right now and am rather scared of what I will learn from the kidney specialist on Monday but am so glad I have everyone here to come to with questions like this.
Posted 1/15/2010 7:19 PM (GMT 0)
I am sitting here wondering what treatments there are, I am already on prednisone and Imuran so what is left to treat kidney involvement? I am a worrier. Enjoying my chai tea though.
Posted 1/15/2010 7:47 PM (GMT 0)
Rose,
There are several options for treating kidney involvement beyond prednisone and imuran. Try to worry. I know it's hard! Thinkin of you and prayin for you!! Judy
Posted 1/15/2010 10:31 PM (GMT 0)
Rose!!! Please try not to worry!!!! I know its so frusterating sitting and waiting for your apt. I have researched as much as possible on treatment for kidneys problems and my results HIGH doses of prednisone, combined with Cellcept are usually the first choice a nephrologist will try, but it depends on your treatment. I was on Imuran and Prednisone when my kidneys got wacked up and they moved me to Cellcept and 60 mg of pred(pred was for 3 months and then weaned to 15). Most people see better results with that than anything else. BUT there is also Cytoxan wiht Prednisone (which I am currently doing and my pred has been at 50-60 mg since sep). Today my rhumey told me at the last rhuemy meeting they mentioned there cytoxan combined with Retuxan for 2 doses...then wait 6 months and another 2 doses of Cytoxan and retuxan. So there are many choices to try, its just getting on the right one. Please let us know what the doctos say on Monday and enjoy your Hot Tea :)!!!
Posted 1/17/2010 4:04 PM (GMT 0)

Hey Rose,

             Take a deep breathe and let it out slowly. Find out the facts before you let yourself fall into depression for something fixable. This is LIFE with Lupus . Your walking and talking , and aware, beats going out in an ambulance lol

             I have been on Lisinopril for ten years. Doesn't stop the infections but works well for the protein.

                      If you can't fix it , just unbreak it !!! One day at a time honey.

Posted 1/19/2010 12:02 AM (GMT 0)
Hey RedRose...How did your appointment with the nephrologist go on Monday?
Posted 1/19/2010 12:56 AM (GMT 0)
well, the nephrologist thinks it might be one of my medications so he changed my meds and we will retest in 2 weeks to see if that fixes the problem if not we go from there. He said my white cell count was through the ceiling.
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