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Thread: HELP confussed about focal proliferative lupus nephritis

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    Default HELP confussed about focal proliferative lupus nephritis

    Hi, I am so confussed. I went to mt nephrologist today to get the results from my kidney biopsy. He told me that I have focal proliferative lupus glomerulonephitis. He said that it meant that the lupus was affecting my kidneys but that it was the mildest form with less than 5% chance of it progressing. He said that I would not need any treatment for it. That was such great news and I was happy when I left. I got a copy of the biopsy report and read it when I got home. I took out my Lupus Book and looked it up. Here's what the book says. Class III is called focal proliferative nephritis ... is a serious complication and will usually lead to end stage renal disease necessitating dialysis if it is not treated. I am so confussed. I will go see my primary dr tommorrow but was just wondering if any of you had any info. Thanks

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    It is hard to deal with all the oinfo given. Did your nephrologist say you had Class 3 for sure? I have Class 4, the most serious - I also know there is a class 5 that you would think is more serious, but can be mild to severe.

    One thing I was thinking about is that there is so much more that goes into your kidney health than just class of nephritis;proteinuria, creatinine, etc. So, perhaps your nephrologist thinks that due to these other factors you are in good shape. Dictionary definitions give generalizations, but don't always have the total picture.

    I think a second opinion is always a good idea. Even though I had to travel 60 miles to get one, my local nephrologist suggested it as well.
    Missy

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    I have class 5 and it was explained to me that they only call it class 5 because they didn't have another way to differentiate it... or something like that... Not because it is any more severe than any other class.
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Missy and Solesinger
    Thank you for replying
    My dr explained things better today. She said that right now the lupus is attacking my kidneys, but that the damage was not bad yet scince all my bloodwork was good with the exception of + ANA and anti ds DNA. I am spilling 1 g in 24 hr which is a lot but not awful. She said that scince my kidneys were still functioning well that the nephrologist wouldn't treat me but my rheumatologist will treat me to stop the lupus from attacking my kidneys and any other organs. Things make a lot more sense today. I see my rhematologist next Thursday, guess I'll know more then.

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    So glad that your questions got answered, and that your kidney problems have been spotted in a good state!

    Best of luck!
    Missy

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    Hello all. OK, I am more confussed now. I saw my rheumatologist at first he said that I didn't need to be treated any further. I then showed him my Lupus Book and he said that he didn't know but that he would research it and call me back. He did that and when he called he said that I was right and that according to the first book that he read I would be treated with Cytoxin. He decided to go online and see if there was an alternative. He read about Cellcept and high doses of prednisone ( according to my weight of 220 it would be 100mg) He said that that seemed like too much to start with and wants to start with 60 mg. He saids I will be treated for 6 months.

    I really appreciate my rheumatologists willingness to do some research and decide on a course of treatment. I am nervous, however because he hasn't dealt with this before. It seems to me that a nephrologist should treat it. I have called a hotline that is set up by my insurance and the nurse thinks that I should seek a second opinion. I called another nephrologist and they said that they would treat with Cellcept and prednisone. Everything that I have read, and I have read a lot, agrees with treatment to avoid worsening of the kidneys.

    I took a copy of the book that said that without treatment Class III and Class IV, both being extensions of the same process, would lead to end stage renal disease. I don't want that to happen, obviously. He called me back today and said that he disagrees with the book. He said that he thinks that I only need to be monitered. He said that it is unlikely it would progress and that you have to weigh the risks of the medicine. I pointed out that it had progressed to class III over the 2 years that he had first saw me. He said that I am being treated with Plaquenil and that until anormalities show up in my blood that I didn't need to be treated further. Although I have NO desire to take any medication ( I delivered two children with no meds) I am concerned that there will be much damage if I continue to wait. My nephrologist said that sometimes this resolves itself. I did read in some of my research that in the general public it is very rare and that if it does happen it is usually the result of infection somewhere else such as staph and that the antibodies deposit themselves in the kidney. In those cases treatment may involve antibiotics and the condition usually clears up. He told me that he has read things that say that treatment isn't always best. I told him that I would love to read that and he said that he would find it and send it to me next week.

    All of this is so frustrating. It's bad enough that I hurt and am tired all the time. It's scary that my doctors don't know or agree on how to treat it and I don't know what to do. Any info would be appreciated. Thanks

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    My rheumatologist and nephrologist were going to talk a week ago and agree on a treatment. :shock: I still haven't gotten any answers from my Doctors? I called back Friday and still nothing. This is so frustrating.

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    Hi Puerto-Rican-Mom-of-2;
    Did you ever get your second opinion?? I truly understand you fear and your frustration!! Especially since you have doen the research. You may have to go over both doctor's heads. You have the right to demand treatment if you choose not to take the "Let's wait and see" approach to your health.
    Like you, everything that I've read has said that, without treatment, the condition could result in end stage renal failure.
    Stay on both of your doctors and make them both understand that you are not comfortable with the 'Wait and See" approach..that you are concerned about the way that your condition rapidly progressed already and that you want to be treated for the condition.
    Let us know if your doctors ever confer with one another and what decisions have been made.
    You will be in our thoughts!
    Peace and Blessings
    Saysusie

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