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Thread: Need support and info from people with kidney involvement

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    Default Need support and info from people with kidney involvement

    I have had 3-4 grams of protein in my urine for some time now, and am scheduled to have a kidney biopsy in two weeks.

    Here are some of my questions:

    What was your actual diagnosis?

    What meds were you put on? For how long? (Cellcept and Cytoxan were mentioned by name, but my doctor said they had a variety of things to choose from depending on the results.)

    What were the side effects? I've heard these are chemo drugs ... is my hair going to fall out? Do they make you weak? Will I have to cancel our planned trip to Disney because I can't be around people?

    Did you ever get "cured," or is it the kind of thing where it get better, then a year or two later it's a problem again and you have to treat it again, and so on for years and years?

    Any info would be appreciated. I am anxious and confused.

    Jenny

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    There are many members here who have had kidney involvement with their Lupus. Hopefully, some of them will respond to you. I will keep my eye on your post and if you get no responses, I will do research to try to help you with some of your concerns.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi Redhead, I have kidney involvement.
    And was on the drugs you just mentioned.
    This was at the age of 15.
    Yes i did have some hair loss, but not very severe to the point of complete baldness.
    I did however see me hair thinning out alot.

    My prognosis was rheumatic fever if i remember correctly. was ruled out later as SLE.

    I still have kidney involvement, but very much under control.


    Did you ever get "cured," or is it the kind of thing where it get better, then a year or two later it's a problem again and you have to treat it again, and so on for years and years?
    There is no cure for Lupus. Neither for the kidney invlovement. Depending on the amount of damage done to your kidneys.
    I'd say it would be a recurring problem.
    If managed correctly it need not be a problem at all.

    I am no longer on those meds. So no more hair loss
    I intend to live forever, so far so good

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    Hi Redhead, I have kidney involvement.
    And was on the drugs you just mentioned.
    This was at the age of 15.
    Yes i did have some hair loss, but not very severe to the point of complete baldness.
    I did however see me hair thinning out alot.

    My prognosis was rheumatic fever if i remember correctly. was ruled out later as SLE.

    I still have kidney involvement, but very much under control.


    Did you ever get "cured," or is it the kind of thing where it get better, then a year or two later it's a problem again and you have to treat it again, and so on for years and years?
    There is no cure for Lupus. Neither for the kidney invlovement. Depending on the amount of damage done to your kidneys.
    I'd say it would be a recurring problem.
    If managed correctly it need not be a problem at all.

    I am no longer on those meds. So no more hair loss
    I intend to live forever, so far so good

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    hi Redhead -

    I was diagnosed with Stage 4 Lupus Nephritis with 4+ grams of protein in my urine. Hematocrit down to 25. This was 4 years ago at age of 26.

    I used Cellcept, Prednisone, Procrit, Plaquenil, Atenolol (then Lisinopril) to get things back under control. I've had some bumps in the road, but I've been off of Cellcept for I think almost 2 years now. Time is flying and I can't remember it all. I still take Plaquenil and Lisinopril (trying to get off Lisinopril didn't work so well for me). Anyhow, I'm soooooomuch better now! My sed rate and proteinuria is all in pretty normal (or what I call "normal for me") range now. There is lots of hope!

    I also had a kidney biopsy. I was really scared, because I had never been in the hospital before. It was much easier than I thought. Acupuncture has really helped me and I had it done before my kidney biopsy, and I feel it really helped keep me calm and less anxious.

    Good luck with everything!
    Missy

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