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Thread: Hi new here

  1. #1
    Join Date
    Apr 2010
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    Default Hi new here

    Hello - Looks like a nice forum, with lots of activity.

    I've had lupus since 1983, initially diagnosed with ITP, but within a few years I started having lupus symptoms and was diagnosed officially with lupus in 1983. I also had APS (lupus anticoagulant) with refractory ITP. My platelet counts were very low, at 10-30,000, regardless of treatment, although I was also clotting at low counts, so required anticoagulation. This resulted in chronic internal bleeding, but without anticoagultion or if my INR was too low, I'd clot. I've had multiple pulmonary emboli and severa DVT's, with an episode of CAPS which resulted in a chronic clot in my right leg, which extends from just below my groin, to just above my ankle. I also had autoimmune anemia and vasculitis. Basically adding each new organ involved lupus symptom every 4-6 years.

    I was pretty much a mess and walking a fine line. In 2007 I had a stem cell transplant at North Western Hospital in Chicago. It took almost a year to see normal platelet counts and negative lupus anticoagulant and negative ANA, but eventually I did experience a remission. I still have the chronic clot, but have not had a new clot and have normal platelet counts since transplant. My ANA is still negative, although I do have a positive Sm and RNP antibody and recently began experiencing chronic hives and itching, with dermagraphia (skin writing). I'm on 4 antihistamines for that, along with steroid nasal and eye drops. I take 400 mg of plaquenil daily, 5-10mg of prednisone for lupus.

    I just had a 3 year follow up at Northwestern for the transplant and completed a 24 hour urine collection. I've never had kidney involvment with my lupus and 24 hour urine collections never showed elevated protein, but this one has shown elevated protein and that has me a little freaked out. Especially since I've had an increase in joint pain and fatigue and with the chronic hives, I just think something is brewing. My lupus tests are the same, my C3 C4 are not low and actually C4 is elevated. The doctor didn't mention anything about the protein in the 24 hour urine, so I guess it's not a big deal, since everything else looks pretty good, but I'm curious when do doctor's look at the elevated protein in a 24 hour urinealysis? Does anyone else know what a doctor looks at beside the protien in the urine, to consider kidney involvement?

    Thanks so much for any informatin you can provide.


  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Kimil;
    First, let me welcome you to our family. I am so glad that you found us and I hope that we will be able to help you and to alleviate some of your fears. Please know that you are not alone when you are here with us.

    Often the signs of lupus nephritis are seen only in urine studies. However, in many people, the urine abnormalities are very mild and may be present during one examination and absent during the next.
    This form of lupus nephritis is rather common and generally does not require any special medical evaluation or treatment. The 24 hour collection is to determine the exact amount of protein lost in the urine over a 24-hour period.
    The WHO (World Health Organization) has classified Nephritis in five (5) categories.

    Class Designation Comment
    I Normal No evidence of lupus nephritis on the kidney biopsy.
    II Mesangial Nephritis Most mild form, responds completely to treatment
    with corticosteroids
    III Focal Proliferative Nephritis Very early stage of more advanced lupus nephritis;
    treated successfully with high doses of corticosteroids
    IV Diffuse Proliferative Nephritis Advanced stage of lupus nephritis with definite risk
    of loss of kidney function; treated with high doses of
    corticosteroids combined with immunosuppressant
    V Lupus Membranous Nephropathy Associated with excessive protein loss and edema;
    treated with high doses of corticosteroids, with or
    without immunosuppressant drugs.

    The tests that doctors will use to diagnose lupus nephritis are:
    1) collection of urine, usually over a 24-hour period;
    Because your body’s waste matter is processed by your kidneys, testing a sample of your urine can show any problems with the way your kidneys are functioning. The most common tests look for cell casts (fragments of cells normally found in the blood, or fragments of the tubules of the kidneys) and proteinuria (protein being spilled into your body because your kidneys are not filtering the waste properly).

    2) blood tests
    Certain blood tests can provide information about kidney damage and how well your body is filtering waste. The creatinine blood test is usually ordered along with a blood urea nitrogen (BUN) test to assess kidney function. A combination of blood and urine creatinine levels may be used to calculate a creatinine clearance. This measures how effectively your kidneys are filtering small molecules like creatinine out of your blood. Serum creatinine measurements (along with your age, weight, and gender) are used to calculate the estimated glo-merular filtration rate (EGFR), which is used as a screening test for evidence of kidney damage.

    3) kidney biopsy.
    A kidney biopsy is done in a hospital. While you lie on your stomach your nephrologist will insert a very thin, long needle through the skin of your back and remove a tiny piece of tissue from one of your kidneys. The tissue will be examined under a microscope to determine how much inflammation or scarring is present.

    Inflammation of the nephrons, the structures within the kidneys that filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body. Abnormal levels of waste can build up in the blood, and edema (swelling) can develop. Left untreated, nephritis can lead to scarring and permanent damage to the kidneys and possibly end-stage renal disease (ESRD). People with ESRD need regular filtering of their body’s waste done by a machine (dialysis) or a kidney transplant so that at least one kidney is working properly.

    Lupus nephritis most often develops within the first five years after the symptoms of lupus start, and usually affects people between the ages of 20 and 40. It is estimated that as many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical evaluation and treatment. Because there are so few symptoms of kidney disease, significant damage to your kidneys can happen before you are diagnosed with lupus.

    In the early stages of lupus nephritis, there are very few signs that anything is wrong. Often the first symptoms of lupus nephritis are weight gain and puffiness in your feet, ankles, legs, hands, and/or eyelids. This swelling often becomes worse throughout the day. Also, your urine may be foamy or frothy, or have a red color. Often the first signs of lupus nephritis show up in clinical laboratory tests on the urine. That is why testing your urine is so important.

    I hope that this information has been helpful to you. Please let me know if you need any further information!
    Look For The Good and Praise It!

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