Hi everyone! I appreciate all the information that I've been able to gleem from these pages. Long story short, in about 1993 after five years of periodic episodes of high fever, etc., I was given a kidney biopsy (they had found blood and protein in my urine during that episode) and was told I had vasculitis. I was treated with Predinsone for a year and then cytoxan. I got to a "remission" period that lasted for a few years. I then kept getting minor flares of something, no big temp, but night sweats, feeling poor, etc. They upped me on Prednisone again and even tried cytoxan briefly, but not with the same emphasis as before.
Earlier this year in April, I went to a Rheumy and after running some special tests on me, told me that I have Lupus. Not sure if I've had Lupus all along or if this is something new, but they figure it's been lupus all along. They started me on Plaquenil and have been weaning me off of prednisone.
So here is my question. Winter is always hard on me. Seem like I get a cold and it starts a variety of various problems. Feel tired, achy etc. Get's me thinking about my disease. I've read in a lot of books where the prognosis for "non-organ" Lupus is really good...can live a normal life span. But I obviously have organ involvement (kindney) where I still spill protein in my urine. I read articles that say that organ involvement cases have an expectancy of 10 years or more. Well, I'm at 12 years plus (depending if those first 5 years were lupus, which I'm sure they were). I get scared when my mind goes in this direction. So I thought I'd ask if there is anyone out there who has been doing well with this Lupus (especially organ involved--kidneys) over the years? I hate feeling like the shoe might drop on me. I'm always afraid of doing urine tests for fear that my kidneys might start going and then they'd want to do that awful biopsy deal (only went through it once and frankly that was enough).
Really, I've done quite well over the years and sometimes think that my biggest problem is the weight I carry now because of the prednisone use. But when this hits me, it hits me out of the blue (can be fine in the morning and start "chilling" in the afternoon and that sets it all off).
Well enough babble from me. Would love to hear some success stories you know or have heard....
I've never had flat-out kidney issues (only things like stones, etc.) , but I do know two people who've had lupus-related kidney problems for 10+ years, one a man who was Dx'ed in his mid-teens. He is pretty stable but does have occasional up's & down's.
I've read that with the modern medicines & medical knowledge that many lupus kidney patients people fare MUCH better than they did years ago. One hardcover comes to mind: the one by Dr. Daniel Wallace, which you seen in most libraries & bookstores. And I think Dr. Lahita's latest hardcover also speaks to the subject bluntly.
Plus, there was just a news blurb on Cellcept last week, touting it as the first new drug for kidney lupus in over 30 years.
Because my knowledge is so sparse on this subject, I'll keep this short. But I wanted to say HI & WELCOME. I know there are people here with first-hand experience, who will hopefully chip in soon. Best wishes to you! Vee
seems that if they did a biopsy, then your dx was vasculitis of the kidney. it is different than lupus nephritis.
i have kidney involvement, but am having great results with cellcept 2000 mg a day.
protein and blood in urine is down, and serum levels are ok.
i am alive and kicking and i have had lupus since 96.
I too am alive and kicking after 34 years with lupus and a kidney transplant 23 years ago now. I had a very severe form of systemic lupus. I'm sure that new drugs since my diagnosis mean that such a radical procedure is only required now in a very few cases. I lead an active life, had a baby after my transplant (now 18) and have a fairly pressured job as a lawyer. I think positive thought helps as well as keeping up to date on medical developments.
Hope that helps. Even if the very worst happens it is not all doom and gloom.