There has been extensive studies and a lot written about the treatmentof Lupus nephritis and there are a lot of opinions regarding the best and safest approach to the therapy. A patient with Lupus Nephritis presents a complex therapeutic approach. Treatment of Lupus nephritis is prolonged, complex and potentially toxic. However, prognosis and outcome of the disease can usually be improved, dramatically, by treatment. It is very important for your doctors to accurately asses the type and severity of your renal involvement. If you have mild glomerulonephritis (Type 1 and Type II WHO classification), you will generally have a good prognosis and may not require therapy or you might respond well to short courses of treatment. More severe forms of lupus nephritis (Type III, IV and V) require aggressive therapy with cytotoxic (cyclophosphamide, mycophenolate mofetil, azathiaprine, tacrolimus), high (pulse) doses of steroids. In some resistant, difficult and severe cases of renal involvement, patients are treated with plasmapheresis. I know that once you start treatment, you will want to see improvement and stop the possibly toxic treatments. Treatment for Lupus Nephritis is usually long, but it can be stopped at such time as immunological tests are back to normal, proteinuria disappears and renal function is stable.
As far as the prognosis of Lupus nephritis, it is pretty much as you have found; five year survival of treated patients with Lupus nephritis from 1990 to 1995 was 82%. That means that only 10-15% of patients with lupus nephritis progressed to end-stage renal failure. Renal failure supervenes usually within the first decade of follow-up. Even patients in renal failure have the option of A proportion of Lupus nephritis patients in endstage renal failure st renal transplant and the recurrence of Lupus nephritis in renal transplant cases is rare.
So, even at its worse..Lupus Nephritis can have a promising prognosis. What stage (TYPE I, II, III, IV or V?)of nehpritis are you in?
I know how frightening all of this can be. We are here for you
Thanks, Saysusie for all the info - you are always a great resource. Mmichelle - I really had no symptoms of nephritis other than increasing severity of anemia over the course of 9 months, which I kepy bugging my MD about, but they kept saying, "we'll test it again in a few months" since I appeared so "healthy" (I always had viruses, too). Anyway, I asked them to re-do the bloodwork two months early since I was moving, and I noticed I was going to the bathroom more frequently, but no pain or anything else. I guess my urine was a bit cloudy, but I didn't see it because I was taking vitamins to try to get my iron level up! I was Rxed antibiotics for a UTI in the meantime, got soooo sick on them, them found out it wasn't an infection after all, and my anemia was almost at transfusion levels. Good thing I had them test my blood early!
I see the nephrologist in my new community for the first time Monday, so I'm hoping to learn more and now I'm going to ask about the severity (now that I know about hey Type I,II, etc). I know that things have improved for my kidneys since I started the Cellcept, as the amount of protein in my urine has decreased and my creatinine clearance has increased. I find it a bit frustrating, because the kidneys affect so much - I have high BP. And Doctors are weird, too. The Rheumy doesn't want to get into the kidneys, but refer you, and you have to ask your GP about the blood pressure and attributed meds, but they don't want to touch the Lupus stuff. It keeps me really busy running to all the appointments! What I think is weird is that I have kidney pain NOW, when I didn't have when my kidneys were worse and undiagnosed. I'll have to ask about that on Monday, too.
Take care and keep me updated about your kidney! And thanks, again, Saysusie - this is great info to share with my husband, who can get a little confused by it all -as we all do.
Diagnosed today- freaking out...
Hi all - My doc called today, and told me I have SLE, and he's referred me to a Rheumatologist - whom I have not yet seen. I don't know about this disease, except that the concept of my body attacking itself really has my head in a twist. And then, there's the whole fertility issue. My husband and I have been trying for a while - I have miscarried, which I hear is pretty common among us SLE folks. OK - enough rambling.
What do I ask the rheumatologist when I see him? How do they find out if my organs are affected?
Iím scared, and I donít know anything about this diseaseÖ
They'll do lots of tests at the Rheumatologist and ask you a lot of questions about symptoms, as well as examine you to determine if you have organ involvement. My kidny specialist told me that about 50 -75 % of SLE sufferers have kidney involvement at some point, but it can range in the amount of problems it causes quite drastically. I have Type 4 Nephritis, the worst you can have, and the kidney doc said I'm a long way form dialysis and I think I'm doing pretty good! If you're like most of us, it'll be somewhat of a relief to know what is going on after years of feeling not quite right. I have read that SLE causes an increase % of miscarriages, but so much else plays into miscarriage, it's hard to attribute it. My Rhuematologist also did another test that saw if I had an increased chance of clotting and/or miscarriage. You could ask about that test, too. I can't remember what it's called, but I have it with my labs in my filing system if you need it.
Good luck and take care,