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Thread: Kidneys

  1. #1
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    Default Kidneys

    Saw my rheumy the other day to talk about my recent lab results. He said this certain set of tests are "finally" abnormal to correlate with the other abnormal ones. He said that since Iíve been seeing him he's just been treating me for lupus, but hasn't 100% been convinced b/c this panel of tests has not matched the others. But now he said "there is absolutely no doubt in my mind that this is definitely lupus. These tests are very strongly abnormal" Apparently, one of the big things is that there was a huge amount of protein in my urine. He said that this amount of protein could have been due to an infection, or the lupus. He said that my urine culture results showed no infection. Which means it's the lupus and my kidneys are very inflammed. We talked about how badly my chest hurts and I can't breathe deeply without and incredible amount of pain and he said that I have pleurisy, which he said means that my lungs are inflamed as well and there's fluid around the outter lining. Right now I'm taking 15mg of steroids in the morning but now I have to take 20mg twice a day for two weeks. He had me test the urine in the office to see if the protein was still high and it was still really high. All in all, not such a hot visit. Just a little worried that all this is starting so soon. I've only been seeing him since september. Hopefully this massive steroid dose will help suppress some of this.

    My question is....what happens if this new steroid dose doesn't get rid of all this protein in my urine? What is the next step? What happens if this treatment doesn't work?

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    Default It's ok

    That is exactly how my lupus was diagnosed because of my kidneys. I was diagnosed 8 1/2 years ago. First I was put on steriods which didn't work at all, they actually put me into kidney failure..which by the way is rare.... Then they tried ace-inhibitors to take the pressure off my kidneys which again didn't work. In my case my kidneys are so sensitive that I can't even take motrin. However it is not the end of the world if the steriods or any other method doesn't work. You can live with it. I have for almost a decade, the only thing I really do different is watch what I eat. I eat A LOT of protien. So don't worry. As long as your not in kidney failure concider yourself lucky. If Lupus had to attack an organ that's the one you wanted it to attack trust me. But don't worry too much. Give all your worries to God and he will help you. I hope all goes well and i really hope that the steriods do work for you. But if they don't just keep in mind that it doesn't mean you're doomed either. Good Luck!

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    Protein in the urine is a big deal and can be a sign of kidney function decreasing. Your doctor should be running other tests to be sure your kidney function is in the normal range. Kidney function problems with Lupus is called Lupus Nephritis, and there are varying types. The first tests may be things called a creatinine or you may need to do a 24 hour urine test, where you collect your urine for 24 hours. A kidney biopsy would be the next step after those tests. The amount of prednisone you are on (15mg/day) is a small amount for people with kidney problems. If tests look fishy for kidney problems, your doctor should refer you to a Nephrologist (a kidney specialist). They may increase the prednisone or look at other medicine options (we can talk about all those if it's even applicable for you, because there are many!).

    I hope this gets you started with some info! I had Lupus Nephritis type 4 and am practically in remission now. I was taking a whole pharmacy of medications at one point and I have permanent damage to my kidneys. But things are great for me now and I don't have to monitor my diet and I am almost off all medications. I hope you don't have to deal with Nephritis, but if you do, there are several of us that have been through it, too.

    Good luck with everything and let me know if there's anything else I can help with!
    Missy

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    I've had lupus nephrotis for 11 years now, it started out with lots of joint pain, and fatigue. I also went through the 24 hr urine tests and two renal biopsies. However i was on as much as 40 mg of prednisone among other meds.

    I was 15 at the time. I was "successfully" diagnosed with lupuis nephritis, however I'm living a very normal and active lifestyle. And was never really in such a bad way that my life was disrupted drastically becuase of the disease. Although there were occasions. I thank god for this everyday.

    So please hang in there, it doesnt always get worse, more often it gets better.
    I intend to live forever, so far so good

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    Quote Originally Posted by Missy
    Protein in the urine is a big deal and can be a sign of kidney function decreasing. Your doctor should be running other tests to be sure your kidney function is in the normal range. Kidney function problems with Lupus is called Lupus Nephritis, and there are varying types. The first tests may be things called a creatinine or you may need to do a 24 hour urine test, where you collect your urine for 24 hours. A kidney biopsy would be the next step after those tests. The amount of prednisone you are on (15mg/day) is a small amount for people with kidney problems. If tests look fishy for kidney problems, your doctor should refer you to a Nephrologist (a kidney specialist). They may increase the prednisone or look at other medicine options (we can talk about all those if it's even applicable for you, because there are many!).

    I hope this gets you started with some info! I had Lupus Nephritis type 4 and am practically in remission now. I was taking a whole pharmacy of medications at one point and I have permanent damage to my kidneys. But things are great for me now and I don't have to monitor my diet and I am almost off all medications. I hope you don't have to deal with Nephritis, but if you do, there are several of us that have been through it, too.

    Good luck with everything and let me know if there's anything else I can help with!
    I am in total agreement here!!!!!!! anything dealing with a major organ should not be treated lightly, ive been put into the hospital twice because of lupus nephritis, yes there are very good possibilities that it can be reversed, but until that happen a patient and their doctors should be extremly vigilant in treating it, Im sorry but as far as being the organ to want to be attacked by lupus, ask some of the people who have gone through dyalisis in here

    ive been battling sle lupus nephritis since 2000 and it has not been fun but there is light at the end of the tunnel, please stay proactive with your kidneys and doctors in order to make the right choices for yourself

    Terry
    Fair Oaks California

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    Hi Chickadee,

    As Missy and Terid said; any kind of organ damage can be critical with lupus. Missy gave you alot of good information, and Saysusie our Administrator will stop in and share more info with you as well.

    I have SLE, with brain,lung,kidney and heart involvement. After my kidney biopsy it was determined that I was at stage 3 in kidney failure. All the nephrologists that I have seen have ALL told me to NOT eat alot of protein. You should only be eating protein that is size equivalent to a deck of cards.

    DRINK LOTS AND LOTS AND LOTS OF WATER...WATER IS THE MOST IMPORTANT AND HELPFUL THING YOU CAN DO FOR YOUR KIDNEYS.

    You can live a quality lifestyle living with lupus, it takes commitment and perserverance to stay the course......this is not an easy disease to live with but it is manageable.

    I wish you the best in your diagnosis process, and stay plugged in here. There are so many wonderful knowledgeable people that can provide you with good information. ALWAYS CHECK WITH YOUR DOCTOR BEFORE TRYING ANYTHING NEW....as it may affect the medications you are on.

    Take Care,
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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    I was just stopping in to see if you wrote an update to how your kidneys (and you!) are doing.

    Thinking of you.......
    Missy

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    Adding to what everyone else has said about lupus nephritis, I too was diagnosed with lupus nephritis type 4 three years ago.
    My kidney problems actually started 7 years ago, when I got sick and labs showed I was losing lots of protein in urine. I was diagnosed with nephrotic syndrome after a biopsy and treated with Chlorambucil (Leukeran) and prednisone.
    Up till 2003 my kidneys were doing very well and I was off medication. Then I started swelling again and gaining weight like crazy. After the steroid treatment didn't work for a year I was diagnosed with lupus nephritis in June 2004, after another kidney biopsy. At that time, I was losing 4 grams of protein. Steroids were not helping much so I underwent what they call plasma exchange (removes auto-antibodies from your blood--which attack the kidneys and cause inflammation). Since then the doctor has slowly tapered the steroid dose and today I'm down to 5mg from 60mg three years ago and I'm losing only 1gram of protein in urine. I think 24-hour urine protein is a must, as is a kidney biopsy to determine the percentage of damaged filters. Sorry that was long!!
    Bottomline: you're not alone. Even if steroids don't work there are other stronger treatment options. And as someone already mentioned, kidney failure is quite rare. Good luck!!!
    I was diagnosed with lupus nephritis, confirmed by bloodwork and kidney biopsy, and mild lupus cerebritis (epileptiform) in June 2004.
    Medications: CellCept, Prednisone; Phenytoin; Lipitor; Zestril, Norvasc; Aranesp (darbepoetin alfa).

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    Hello Chickadee,

    When I was 13 I was diagnosed with Lupus Nephritis. I had to have 2 kidney biopsies and multiple 24hr urines. After my kidneys showed no sign of improving my doctor decided to put me on dialysis, which is definately NO fun at all. My blood pressure rose to something like 200s/100s and I had 3 seizures because of it. I had to be flown to a Children's Hospital where I underwent tests and dialysis for about a month. When I started improving I did get to come back home but I still had to undergo dialysis. Only by the grace of GOD did my kidneys begin functioning on their own again! It's been 8 years and I've had no problems with my kidneys at all!! Now, I am only taking 1mg of prednisone every other day!! I thank GOD everyday that it stays this way! My point is, please stay on your doctor about monitoring your situation! We don't realize how precious our organs are until we almost lose one. As dandoon said, I would definately recommend a 24hr urine and even a kidney biopsy so if there is something serious going on you can catch it early. GOD bless and let us know how everything goes!!

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    I understand your fear and trepidation. There are several avenues used when treating kidney disease in Lupus. First, let me give you a little explanation of what protein in the urine indicates:
    The most important urine proteins found with kidney disease are albumin and antibody fragments. Albumin is the most abundant protein in the blood and it is important in transporting other things around the body as well as keeping fluid from leaking out into the tissues. Antibody fragments result from diseases involving the cells that produce antibodies (such as LUPUS). When the kidneys are unable to absorb all of them, they spill over into the urine.
    Once protein is found in the urine, it is often important to measure how much protein is lost in a day. Collecting urine for a 24-hour period (24-hour urine collection) and then measuring all the protein in it has been considered the gold standard. However, because it is very inconvenient and prone to error if the urine isnít collected properly, many doctors now use the urine protein (or albumin) to creatinine ratio instead. It is requires only a small sample of urine and it is relatively accurate and convenient.
    Specific treatment depends on diagnosis and amount of protein being lost. Most patients are treated with an ACE inhibitor (or angiotensin blocker) and good blood pressure control medication. However, patients with autoimmune or inflammatory diseases (like Lupus), are usually treated with more powerful drugs that also affects their immune system.
    IMPORTANT: Lupus nephritis or lupus glomerulonephritis is the medical term for the kidney disease which occurs in systemic lupus erythematosus (SLE). It is estimated that about a third of patients with lupus will develop nephritis which requires medical evaluation and treatment. Lupus nephritis is an important and potentially serious symptom of lupus!
    The two major forms of drug therapy used in the specific treatment of lupus nephritis are corticosteroids to control inflammation within the kidney, and cytotoxic or immunosuppressive drugs to suppress the activity of the immune system.
    Corticosteroids -- such as prednisone, prednisolone or methylprednisolone (Medrol) -- are often used to treat lupus nephritis. High doses of corticosteroids are given until improvement in the lupus nephritis is seen. The dose of corticosteroids is then slowly reduced under careful observation of a physician to make certain that the nephritis doesn't worsen. (Never attempt to reduce your dosage on your own!).
    Cytotoxic or immunosuppressive drugs -- such as azathioprine (Imuran) or cyclophosphamide (Cytoxan) are often used in patients who do not respond to corticosteroid treatment. These drugs block the function of the immune system which in turn serves to prevent further damage to the kidneys. There is clear evidence from research studies that these drugs may be beneficial in patients with severe lupus nephritis.
    Despite appropriate treatment, some patients with lupus nephritis develop progressive loss of kidney function and renal failure. This requires support of kidney function through the use of artificial dialysis. This can be done either by hemodialysis in which blood is passed through a dialysis machine and filtered directly, or by a procedure called peritoneal dialysis in which fluid is placed in the abdominal cavity and then subsequently removed. Finally, kidney transplantation has been very successful in patients with renal failure from lupus nephritis and eliminates the need for chronic artificial dialysis.

    I hope that I've answered your questions. Please let me know if you need anything further.

    Peace and Blessings
    Saysusie

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