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Thread: Lupus Nephritis

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    Default Lupus Nephritis

    Hi all!
    My lab work has been changing gradually over the last few months. Protein and creatine levels indicate kidney involvement. We have been down the path of increased prednisone, methotrexate, cellcept and are now going to see a Nephrologist to have kidney biopsies and possibly start on Cytoxan therapy.

    Anyone had experience with this complication? I could use some words of wisdom. I have dealt well with Lupus for years but this new twist has really scared me.
    Miller in Hollister, CA

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    Gwen;
    I, personally, have not experienced your symptoms and I had hoped that someone would respond to your inquiry. Let me know how your appointment with your Nephrologist goes...at the very least, I can offer you support and try to ease your mind!

    Stay in contact with us
    Saysusie

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    Hi
    I just posted thesame question for lupus nephrtis. My wife has been diagnosed and has had her biopsy done. We are waiting for the results on that.
    As for words of wisdom. I would not worry too much. It is a scary fact however it is something that we must live with. My wife took the news better than I did. But there is hope.
    . The treatment is normal and alot of lupus patients have undergone the same treatement. I would go to your nearest lupus group and talk to several people there. Group therapy is the best way of confronting the disease.
    Have you had a biopsy done. If not I would suggest that you get one done before your treatment begins . Based on what type of infection the treatments are different. there may not be a need to go to the cytoxan. Consult your nephrologist on that. Let me know what the outcome is and if you have any questions on the biopsy.

    thanks
    tropically

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    Default been thru the biopsy twice

    hi!
    i had the biopsy in 1994 and again in 2002. the first time they kept me on the same amount of prednisone, which i eventuallky got off of entirely.
    in 2002 they put me on chemo (cytoxan) but i only did 2 treatments because it made me very sick- i did not react well to it- and i was on 9 other drugs anyhow.

    then i turned to alternative medicine. twice i have gone through chelation therapy and twice i have had my kidney disease reverse from the chelation! and that's something the mainstream drs can't offer- they can only try to stave off more damage.

    if you do seek out chelation, get a cautius dr who will only give you 1/3 strength to protect your kidneys, and drink plenty of water.

    chelation reduces inflammation,which is usually what is going on in the kidneys: scar tissue and inflammation. it was originally invented to treat heavy metal (lead) poisonging and they subsequently found out it clears out veins and artieries. i've been very pleased both times at the reversal of the kidney disease. the nephrologist was baffled.
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    Hi, Gwen! I have Lupus Nephritis, Type 4. I've been dx since 12/03, and had a biopsy in 6/04. Things were so bad that they didn't need to do a biopsy for a long time. The biopsy went a lot better than my Dr. said it would. I didn't even need any general anesthesia or pain medication afterward! But, I did do acupuncture the day of the procedure (I just happened to have it scheduled that way). I'm on Cellcept, Prednisone, Lisinopril, Prevacid, Milk Thistle, and vitamins and minerals. In June, we thought I might have to go on Cytoxan, but things started looking up. I think the Lisinopril and acupuncture/acupressure has helped my proteinuria.

    Let me know if there are any other questions you have. I'm happy to answer. I know it's a scary time.

    Missy

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    i'm on lisinopril too and it seems to really help the nephritis, with no side effects that i can tell.carla
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    Hi! I have Lupus Nephritis, too. It hasn't been that scary, because the kidney involvement is how I found out I had Lupus in the first place. So I learned about it all at once. Protein in my urine, high blood pressure, and staying sick this past January through April. I decided to go to a Nephrologist, because kidney disease runs in my family. (my mom has Polycystic Kidney Disease...transplant in Feb. 2000) While I was there, I told him about how I was having joint pain, and fevers every night. He had some bloodwork done, and sent me to a Rheumatologist. So I had a biopsy in June. It wasn't bad at all. The worst part is that I had to lie down for 6 hours after they did it. They made me use a bedpan!! Yuck! It didn't hurt at all. My creatinine was as high as 2.6. Two weeks ago it was 1.3. I'm taking Imuran, Plaquenil, and of course Prednisone. Oh yeah, I had an ultrasound of my kidneys, too. Amazingly, I don't have polycystic kidneys...which is a blessing!!! Lupus Nephritis and PKD together--my kidneys wouldn't have had a chance!!
    Sharyn

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