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Thread: Newly Diagnosed with Lupus Nephritis...very scared!

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  1. #1
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    Default Newly Diagnosed with Lupus Nephritis...very scared!

    Hi!
    I have been living with lupus since I was 17. I am now 28 and have managed to maintain the disease very well with mostly skin and joint problems. This summer, after some proteinuria I underwent a kidney biopsy which showed class 3 nephritis. It was caught very early and my docs feel they can stop the renal involvement and put the lupus into remission with a six month Cytoxan treatment. Does anyone have any advice? How were the side effects? Did the lupus improve?
    I am very scared! Any advice would be so GREATLY APPRECIATED!!!

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    I can understand your fear as too have lupus nephritis,,, first advice i can give you is fear causes stress and stress is not good for lupus, with that said try not to stress yourself out(easier said than done).. you're at a real good level for them to regain control of your kidneys so keep a real positive atitude and try to do everything they recommend to help yourself,such as keeping a medical journal and staying on top of your medications

    have you talked to your doctors about cellcept?? from what i understand it has a slightly better result than cytoxin with less side effects, but on the other hand your doctors may have a reason for choosing cytoxin,, during your treatment request their numbers so you can reach them for any reason as it is critical that you pay attention to your body and contact them with any problems

    stay as active as possible and be carefull of who you're around and if they're sick or not because in fact they are dropping your imune system and are more exsposed to illnesses and infections than you are probably used to, sometimes lupus takeover of the body can affect in over tolerant way making a person feel like they cant get sick

    if you smoke now is the time to stop,, not only will help your treatments but the effort and concentration it takes to quit smoking takes your mind off of the nephritis

    maitaining control of your blood pressure is critical so dont put yourself in situations where it increases, be it stress or medications

    I wish you the best of luck and god bless

    Terry

    Oh and by the way welcome to the boards, if you have any more questions feel free to ask, there are many experienced people in here
    that are willing to help,,, with that said please dont take any different meds without consulting your doctors,, there several homeopathic treatments that can disagree with lupus and the treatments you're going to be on
    Fair Oaks California

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    Hi Tas,

    Yes, I have chronic lupus nephritis and have had it for 22 years. I was on Cytoxan treatment for 13 months from 1990 through 1991. It has helped preserve my kidney function since the treatment. Of course, different people react differently to it, but hopefully it will help you too.

    The side effects are somewhat harsh from Cytoxan. They put you on the lowest dose possible, but it still makes you pretty sick. Luckily, there are much better anti-nausea drugs now than what we had in the '90's. I lost some hair, but it was an all over type of thing and wasn't noticable at all. Cellcept is supposed to do pretty much the same thing, from what I understand, without the side effects.

    Good luck with everything! Email me if you wish/need to talk with someone who's been-there-done-that for quite some time now.

    Susan
    So long, and thanks for all the fish!

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    Thanks for the responses...
    I have tried Cell-Cept with some response. Doctors attribute the Cell Cept to keeping the kidney damage to a minimum.
    Susan, I noticed you are from St.Petersburg, FL. Not too far from me in Palmetto. Are you a member of any support groups? I would really like to get involved in one!
    THANKS!
    Tacita

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    Yes, there are several Lupus support groups in the Tampa bay area. We have at least 2 here in St. Pete and there's one for sure that I'm aware of in Tampa. One of the St. Petersburg groups meets this coming Saturday at 1pm at St. Anthony's Hospital. (I won't be able to attend this month because this is my weekend to work. ) If you need contact information from the group leader, Linda, just let me know and I'll email or pm it to you.

    Susan
    So long, and thanks for all the fish!

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    I was recently diagnosed with stage 4 kidney disease and lupus... they never put me on this cytoxin everyone mentioned.. i have been on cellcept since i was diagnosed 1000 mg 2 x/day and now 1500 mg 2x/day.. the cellcept itself does not give me many side affects...not as bad as the steroids i am on, although a high dosage does give me insomnia..but my numbers seem to be gettting better...gfr was at 25 when i was in the hospital(so almost dialysis) and i am now at 39...so they are improving...i've read there are alot of side effects from the cytoxin and therefore i am glad my doctors never tried it...hope this helps =)

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