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Thread: new to nephritis

  1. #1
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    Default new to nephritis

    Tried this on the men's forum (without response) and realized this may be the better forum for the subject:

    First time on this (or any forum) site. I'm a 55 y.o. man, had SLE diagnosed about 18 years ago--subacute cutaneous type. I've been very fortunate to have it stay there, with flares about once a year that were suppressed with increased prednisone. This year I've developed nephritis and now am facing decisions about treatment. Just had my conference with the nephrologist to review the biopsy results a couple of days ago. He has laid out the options of infused steroid + Cytoxan + fairly high dose oral prednisone (60 mg) between infusions OR the oral Cellcept (sp?) + not-so-high prednisone (30 mg) therapy--both of these for six months. He clearly thinks the the first one is indicated in my case (because of my creatinine level). So, I'm interested in hearing from others who have had that particular regimen to treat nephritis--or something like it. Any warnings, precautions, what worked, what didn't, inspiring tales will be much appreciated.

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    Default hi

    Just to say hello and welcome to the forum. I carnt help you on this,but hang in there as other members will be here soon and will be able to give you there advice.

    Sending gentle hugs
    love
    Angel.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  3. #3
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    Default My treatment for nephritis

    Hello,
    Nephritis is what led to my lupus diagnosis. I was in stage IV kidney failure by the time they diagnosed me with SLE and I had to begin treatment right away. A lot of what your doctor suggested is the medication that I have took or am taking.

    When I was first diagnosed and quite sick at the time I was only 12 years old so I didn't have much input on the medicine I was taking but I had a few doses of pulse steroids and my first Cytoxan treatment in the hospital. But once I came home I continued with a monthly Cytoxan treatment and I took 60mg of prednisone every other day (to try to diminish its nasty side effects). I continued with this treatment for 2 1/2 years. Then at this time my doctor stopped my Cytoxan and put me on Cellcept instead. It has been seven years since my diagnosis and I am still taking Cellcept.

    To be honest with you I prefer the Cellcept over the Cytoxan. The first option your doctor gave you though may be a good idea to quickly get the nephritis uder control but I would try to get on Cellcept when possible.

    Some of the reasons I switched from Cytoxan to Cellcept are that at that time it appeared that I kind of hit a road block in approving according to my bloodwork. A lot of my levels were staying the same, not getting better anymore and still were not normal. Another is that towards the end I was getting quite sick from the Cytoxan. It's nasty stuff. For the last 6 months or so the smell of food would make me sick, if i ate any thing I would vomit, and I had horrible migraine headaches.

    The Cellcept was a lot better for me. It was in pill form which made it much more conveinent then having to go get my cytoxan treatment for 5 hours. It also made it where I didn't have to get an iv put in every month which for me meant three pokes b/c my veins would hide (they knew what was coming). I also have not had any problems or bad side effects from the Cellcept. It also helped me improve and get over the road block I hit. Basically all of my bloodwork levels are normal now. Also after I began the Cellcept my doctor finally started reducing my prednisone dosage. Now I am only taking 5mg of prednisone every other day.

    Anyway that is my experience and advice for you but I also know that every person is different. These medicines may effect you differently but Good Luck!!
    (Sry it was so long I just wanted to be thorough)

    Keep us updated and let us know how things are going.

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    Default

    hi awhite, and welcome to the group.

    i can not help you with your particular question,but i know there are members who have been diagnosed with nephritis, and are on various treatment options. I know they will be along and hopefully they can help you soothe your concerns.
    Phyllis

    share a smile today

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    Default

    i was diagnosed with class III nephritis in february and my doctor put me on cellcept and 40mg of prednisone. it took about a month for my lab results to improve. once they did, my prednisone was decreased. i'm still tapering it (now down to 15mg).

    i think most doctors are leaning toward cellcept over cytoxan these days. if your body does not respond to cellcept, you may have no other choice though than to take cytoxan. the first option you mentioned is going to have much worse side effects than the second option. if your doctor is truly giving you the choice, choose option #2.
    23 year old clinical psychology grad student with lupus (SLE) and nephritis
    Medications: CellCept, Plaquenil, Prednisone, Lisinopril, Lipitor, OsCal+D

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