5th November 2004
Hi, Dixzeland. I was just diagnosed with lupus this past April. Having kidney involvement (I pray you may be spared) just blasts you further into the strange twilight zone that is lupus. I got my first 24-hour urinalysis results back in early May, they were at 800. Started plaquenil at that time and the doctor told me we would be watching this very closely. She mentioned beginning prednisone, but I didn't want that yet, so we waited another month.
My next round of lab work in June showed my protein at around 2,400, tripled from May. I finally gave in on the prednisone, she put me on 20mg for one week, and then down to 15mg daily. She also scheduled me for a kidney biopsy at this time. It was pretty inevitable that the biopsy would have to be done, though it scared the crap out of me. I didn't want to do it, felt like these people had to be kidding to think I had kidney damage when I felt fine, was peeing like normal, get out of my face, but that whole attitude seems silly to me now. Nothing but denial.
You need to have the biopsy done to get a baseline determination of the condition of your kidneys early on, so that the progression of any kidney damage can be tracked as time passes. It could be that you have little or no damage and are years, decades maybe, away from having any real trouble with your kidneys. Or, it could be that you have a lot of damage and your kidneys need immediate attention to stave off rapid failure. The blood and urine tests do tell one side of the story, but there is no substitute for actually looking at the kidney tissue itself to know for sure.
Right before the biopsy, I had one last 24-hour urine test. It was at like 3,500. This sealed the deal for me, and I gladly went through with the biopsy. The results showed I had membranous glomerulonephritis, not the mildest form of nephritis, but far from the worse. My kidney function is normal (creatinine clearance and all that), but the progressively high protein indicates some scarring has taken place. I spent another month on the 15mg of prednisone, but the next protein reading was about the same. At this time, the doctor wanted me to choose between going on immunosuppressants or high dose steriods. Her preference was immunosuppressants, Cellcept, specifically. I felt paralyzed to choose either and took another month to think the situation over and read up on the best course to take.
By my last appointment in October, I had decided that I simply could not take the Cellcept yet because of the risk of infertility. I told her I would take either azathioprine (does not affect fertility) or a high, but short, course of steroids. But wonder of wonders, my 24-hour urine levels had actually begun to go down on their own, to around 2,200. Still way high, but a whole 1,200 units down from where it was, a very positive development. What the doctor and I decided to do was to give my kidneys a quick blast of steroids (30, 25, 20, then back to 15) to encourage more healing and progress with the lower protein readings. That is where I am now. My next appointment is the first week of December, a two-month interval instead of the normal one month before we take another protein reading, since my kidneys seem to be holding their own.
If the biopsy gets mentioned for you, I would have it sooner rather than later. It may take you a little time to go from the "I don't want to know" stage, to the "I must know" stage. You feel so helpless so often with this disease, and kidney problems are so silent and sneaky. Knowing gives me some feeling that this thing is not absolutely out of my control and at least can make informed decisions about what course to take. Without the biopsy, you and your doctor are kind of flying blind. Good luck.
My next round of lab work in June showed my protein at around 2,400, tripled from May. I finally gave in on the prednisone, she put me on 20mg for one week, and then down to 15mg daily. She also scheduled me for a kidney biopsy at this time. It was pretty inevitable that the biopsy would have to be done, though it scared the crap out of me. I didn't want to do it, felt like these people had to be kidding to think I had kidney damage when I felt fine, was peeing like normal, get out of my face, but that whole attitude seems silly to me now. Nothing but denial.
You need to have the biopsy done to get a baseline determination of the condition of your kidneys early on, so that the progression of any kidney damage can be tracked as time passes. It could be that you have little or no damage and are years, decades maybe, away from having any real trouble with your kidneys. Or, it could be that you have a lot of damage and your kidneys need immediate attention to stave off rapid failure. The blood and urine tests do tell one side of the story, but there is no substitute for actually looking at the kidney tissue itself to know for sure.
Right before the biopsy, I had one last 24-hour urine test. It was at like 3,500. This sealed the deal for me, and I gladly went through with the biopsy. The results showed I had membranous glomerulonephritis, not the mildest form of nephritis, but far from the worse. My kidney function is normal (creatinine clearance and all that), but the progressively high protein indicates some scarring has taken place. I spent another month on the 15mg of prednisone, but the next protein reading was about the same. At this time, the doctor wanted me to choose between going on immunosuppressants or high dose steriods. Her preference was immunosuppressants, Cellcept, specifically. I felt paralyzed to choose either and took another month to think the situation over and read up on the best course to take.
By my last appointment in October, I had decided that I simply could not take the Cellcept yet because of the risk of infertility. I told her I would take either azathioprine (does not affect fertility) or a high, but short, course of steroids. But wonder of wonders, my 24-hour urine levels had actually begun to go down on their own, to around 2,200. Still way high, but a whole 1,200 units down from where it was, a very positive development. What the doctor and I decided to do was to give my kidneys a quick blast of steroids (30, 25, 20, then back to 15) to encourage more healing and progress with the lower protein readings. That is where I am now. My next appointment is the first week of December, a two-month interval instead of the normal one month before we take another protein reading, since my kidneys seem to be holding their own.
If the biopsy gets mentioned for you, I would have it sooner rather than later. It may take you a little time to go from the "I don't want to know" stage, to the "I must know" stage. You feel so helpless so often with this disease, and kidney problems are so silent and sneaky. Knowing gives me some feeling that this thing is not absolutely out of my control and at least can make informed decisions about what course to take. Without the biopsy, you and your doctor are kind of flying blind. Good luck.