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09-13-2003, 08:36 AM
Hi, I have just been diagnose with systemic lupus a few months ago. There's a question that has been bothering me quite a bit though-you see, lupus have affected my kidneys and I protein leakage, though it's getting better recently. What are my chances of recovery?Will it result in kidney failure? :(

09-15-2003, 06:49 AM
Hi Jukebox and welcome to our forum :D
Here is what I was able to find out about Lupus and the Kidneys:
Approximately half of all lupus patients, at some stage, have kidney inflammation. Extreme kidney disease requiring dialysis or transplation is extrememly rare in lupus. The most common major kidney problem is that of protein leakage in the urine. It can gradually lead to a lowering of the protein level in the blood (a low albumin level) and when this happens, there is a tendance to ankle swelling, fluid retention and fluid bloating. When the kidney is inflamed, the blood pressure frequently rises. When the kidney is more sverely damaged, its normal filtering process is grossly impaired and toxic elements (such as urea and creatinine) build up leading to excessive weight loss, nausea and general malaise.
Urine testing looks for urine sugar, albumin, bile products and so on. If you are losing protein in the urine, the amount of protien will be quantified. To do this, a 24-hour urine preparation is used.
When there is kidney involvment with lupus, the treatment is usually a combination of steroids and immunosuppresive medicines. For more active or severe kidney disease, cyclophosphamide is given, generally intermittently by injection (in the form of a drip given into the vein, usually weekly for 3-4 weeks, then monthly for 3-12 months). A milder immunosuppressive used is Azathioprine, given as a tablet; and Cyclosporin-A.
Even if your kidney is damaged to the stage where chemicals build up...then dialysis will be used. Due to the advances in dialysis, kidney (renal) failure can be stabalized. Transplants, especially for LUPUS patients, have been very successful. For some reason, the disease does not return to damage the transplanted kidney. Doctor's are not sure why but think that it may be due to the strong treatments and medications used for transplanttion.
So, it seems that, regardless of the severity of your kidney involvment, there are successful treatments and medications. I, too, had protein leakage, but I never developed serious kidney inflammation and, like I said earlier, extreme kidney disease which would require dyalisis or transplantation is extremely rare!
Try not to stress over this, as it happens to most Lupus patients and, with treatment and medication, it can be stabalized. The last thing that you want to do is to become unduly stressed - this is a big "no-no" in the management of our disease!!!
Take Care
Peace and Blessings

09-16-2003, 06:39 AM
Thanks for the information, it really help a lot :o .Problem is, my doctor is too pessimistic or rather, is terrific at scaring me to death. However, what she did mention was that though my protein leakage is improving(0.1g), my C3 and C4 level are still rather low. Do u have any idea what are C3 and C4 levels? I know they are SLE markers, but what exactly do they do?

09-16-2003, 04:52 PM
The best serological marker for LUPUS is a low level of complement (plasma C3 and C4). Complement pathways augment the effects of the immune system. They induce a substance, naturally present in the blood that renders bacteria susceptible to phagocytosis (cells that engulf and digest cells, microorganisms and other foreign bodies in the bloodstream and tissues) , to digest foreign bacteria, decomposition of pathogenic organisms and the production of inflammatory mediators. The pathways consist of cascades, in which a significant amount of activation can occur as a result of the activation of a few molecules. There are two complement activation pathways, initiated by different stimuli, either antigen-antibody complexes, or bacterial products. Immune complex activation activates C4, and both pathways result in activation of C3, which in turn provokes activation of the final lytic ( activation of a specific antibody that acts to destroy blood cells, tissues and microorganisms) pathway. Both C3 and C4 are produced by the liver. The role of complement in systemic immune-complex diseases is exemplified by SLE. C3 deficiency leads to increased susceptibility to infection while C4 deficiency leads to and increased risk of developing SLE.
Doctors will complete a blood count to check you levels of red cells, white cells or platelets. Your blood work will include C-complement tests. "Complement" is a blood protein that destroys bacteria and helps to control inflammation. Complement proteins are identified by the letter "C" and a number, the most common complement tests are C3, C4 and CH50. In these tests, doctors are looking for evidence of a chronic, inflammatory disorder of the immune system (such as LUPUS). The classic and alternative complement pathways converge at the C3 step in the complement cascade. Low levels indicate activation by one or both pathways. Most diseases with immune complexes will show decreased C3 levels. C4 is a component of the classic complement pathway. Depressed levels usually indicate activation of the classic pathway. Complement C4 can be deficient in up to 80% of SLE patients. If your blood complement values (or the C3 and C4 levels) are low, and you also have a positive ANA, doctors will likely make a diagnosis of LUPUS.
I hope this has been helpful!
Best of Luck and Take Care of Yourself

09-17-2003, 04:46 AM
Dear Saysusie;
Thanks for the information.At least now I know what the doctors are talking about whenever they give me that glum look :roll: about my C3 and C4 level.
Unfortunately, I have recently develop really vicious looking rash on my legs. Going to the hospital soon for my 6th methylprep!!! :mad: It is the last one and my C3 and C4 level simply refuse to budge. :( The doctor says that if it STILL doesn't improve, she going to let me try what cancer patient take.
If not, she too mention about bone marrow transplant. What has the bone marrow got to do with the immune system??? And how is cancer treatment effective in controling LUPUS???Anyone tried these treatment before?
(PLS: Hope you don't mind the fact I keep bombarding the forum with questions....the essence of youth, can't resist question :o )

09-17-2003, 08:06 AM
Jukebox: Doctors and researchers have reported success using high doses of the anti-cancer dug "cyclophosphamide" to treat SLE patients. It is a chemotherapy that is given as a treatment for some types of cancer and it is a clear fluid (after being dissolved from powder). Cyclophosphamide is given as an injection into the vein (intravenously) through a cannula (a fine tube inserted into the vein). It may be given through a central line inserted under the skin into a vein near the collarbone.
Since Lupus is a disease wherein the body's immune system attacks itself, it has been found that high doses of cyclophosphamide "blasts the lupus once and wipes out the abnormal immune system allowing the body to relearn and to function normally without further therapy." Doctors believe that the drug reprograms the immune system.
Bone marrow's stem cells give rise to ALL IMMUNE CELLS and are resistant to high-dose cyclophosphamide. The malfunctioning immune cells are destroyed by the drug, while the stem cells withstand the therapy and continue to rebuild a new (and hopefully) disease-free immune system.
Some doctors are using high-dose cyclophosphamide with a bone marrow (or stem cell) transplantation. Because high doses of the drug are toxic to the bone marrow (stem cell), they collect and re-infuse a portion of the patient's bone marrow (stem cell) following treatment to repopulate the marrow destroyed by the treatment.
Stem Cells have two important characteristics that distinguish them from other types of cells. First, they are unspecialized cells that renew themselves for long periods through cell division. Second, under certain conditions, they can be induced to become cells with special functions, such as the beating cells of the heart muscle or the insulin-producing cells of the pancreas! I am sure you have heard some of the hoopla concerning embryonic stem-cell research!! Stem cells in the embryo are important because a small group of about 30 cells gives rise to hundreds of specialized cells needed to make up an adult organism (the heart, lung, skin and other tissues). in some adult tissues, such as bone marrow, muscle and brain, a population of adult stem cells generate replacements for cells that are lost through normal wear and tear, injury or disease. A blood forming adult stem cell in the bone marrow, known as hematopoietic stem cell, give rise to cell types of a completely different tissue known as plasticity which includes blood cells becoming neurons, liver cells that can be made to produce insulin, and hematopoietic stem cells that can develop into heart muscle. the primary roles of adult stem cells are to maintain and repair tissue and scientists have found adult stem cells in many more tissues than they once thought possible. The most important application of human stem cells is the generation of cells and tissues that could be used for cell-based therapies. Stem cells, directed to differentiate into specific cell types, offer the possibility of a renewable source of replacement cells and tissues to treat diseases.
Adult blood forming stem cells from bone marrow have been used in transplants for nearly 30 years. Certain kinds of adult stem cells seem to have the ability to differentiate into a number of different cell types. It is sort of a renewing/regenerating process!
I hope that I have been helpful
I am always here to answer any questions that you have. That is why this forum is here: to research for you, answer your questions and provide some comfort!
Take Care
Peace and Blessings

09-18-2003, 03:55 AM
Wow....if you don't mind me saying, I think you are a teriffic researcher. Thanks again for those information, they are really informative and let me understand my condition better. :D
My father is thinking about sending me for 2nd option. It has been 6 months since my first treatment, but my C3 and C4 level are still rock bottom low(42,5)These are the medication that I take:
Mycophenolate Mofetil
There's more, like folic acid and calcium sandoz, but those are mainly(I think) to minimise the side effects of the prednisolone because I am highly sensitive to them.
Besides what I am taking, what cancer patient take and bone marrow transplant, are there any other types of treatment for lupus?Does everyone takes prednisolone? :!:

09-19-2003, 06:51 AM
Jukebox; There are several different therapies used for LUPUS and they depend upon the symptoms you are presenting. The medications that you are currently taking are the most successful for SLE. The medications fall into categories and most LUPUS patients use at least one drug treatment from each category. The categories are as follows:
Non-steroidal anti-inflammatory drugs such as asprin, naproxen, ibuprofen, salsalate (saliscylate) and indomethacin. You should avoid gastro-toxic NSAIDs.
Hdryxychloroquine (plaquenil) is the antimalarial drug used most often. You should have eye exams every 6-12 months as a small portion of patients using this devolop retinopathy.
Corticosteroids are used to control joint pain. Prednisone is used for maintenance therapy and is taken daily. Other drugs in this categoray are, methylprednisolone sodium succinate.
these medications are given for inflammatory arthritis in LUPUS (as well as for a number of other LUPUS symptoms. They include: Cyclophosphamide, methotrexate and azathioprine
The treatment for cutaneous Lupus (Lupus of the skin- Discoidal) includes:
Sun block - Antimalarials - corticosteroids - immunosuppressive drugs and Thalidomide (one of the most effective drugs for the treatment of discoid lupus but its use is limited due to an increased risk of retinopathy.
Please do not be concerned about asking questions. As I said, that is why this forum was set up! If you need anything further, please feel free to ask!
Take Care Of Yourself :P

09-21-2003, 02:11 AM
Thanks a million!!! :D My father is pretty convince now when he hears that my treatment is the best. He says he will reconsider 2nd option :? .
I'm not too sure, but it seems to me that nearly all autoimmune system disease have no cures at all. Is it true?

09-21-2003, 07:01 AM
Yes, you are pretty accurate. Most auto-immune diseases have no one particular cause and, therefore, have no absolute cure!!! They are fairly unpredictable diseases...Like cancer, they go into remission due to the success of treatment, physical care and a host of other factors!!

Best of Luck to You...we are here for you!! :lol: