elevated protein in urine

[Dixzeland]

Besides having Lupus, I now have elevated protein in my urine. My Rheum. wants to do more testing. Could anyone tell me what I can look forward to?Thank you

[kimnyc]

Hi Dixze,

I have protein in my urine also, but it has remained at 1+ since my first testing back in July. My rheumy, who tends to fall on the overly cautious side (thank God), sent me to a kidney doctor. In the end, both felt that there wasn't anything to do right now. I'm being closely monitored through monthly visits to the rheumy, another 24 hour urine collection for the renal doctor, and vast amounts of blood tests always.

From what I understand, though, I will have to have a kidney biopsy in the future in all probability. It's never really normal to have any protein in the urine. If you have larger amounts, you may have the kidney biopsy sooner rather than later but, in all cases, the biopsy seems inevitable. What seems to happen with lupus is a cycle of inflammation and scarring of the kidneys. The biopsy will tell, to some degree, the extent of the scarring. From there, new meds may need to be introduced, such as steroids or immunosuppressants. Caught early, it is possible to save the kidneys from severe damage, so that's the goal - early indentification and treatment as soon as it becomes necessary.

I asked my rheumy if there are any stats on the # of patients who progress to more severe kidney damage, the # who stay the same, etc and she said that there's really no way of telling - it's all very individual.

I'll be curious to hear what others have to say about this issue; it has been one of the more disturbing aspects of my diagnosis and it can be quite frustrating to feel as though there's nothing to do but wait it out!

Best,
K

[renae]

Hi there--hopefully I can help you both by sharing my experience. I have lupus nephritis (lupus w/kidney involvement). When I was diagnosed with lupus in 2001, my urine protein was 3+. I was put on a high dose of prednisone along with plaquenil. They would check it every month and it stayed pretty much the same. Then about 4 months later, I noticed my ankles were so incredibly HUGE! They literally looked like tree stumps--it was so scary. I called the doctor, they had me come in and took a urine and my protein level had shot up to 10+! It was then they decided that I need to have a biopsy done. I was really scared but it wasn't bad at all. I had a great doctor! Anyway, from that they determined that I have a lot of kidney damage and I was put on Cellcept. At the time, cellcept was used for people who had kidney transplants in order to prevent rejection but my nephrologist wanted to try it with me to see if it could help. I had so much damage that they were pretty convinced that I would be placed on dialysis and need a new kidney. So I would have to see my nephrologist every 6 weeks and the protein levels would flucuate but never seemed to go below 5. Then about this time last year, my levels seem to be going down consistently. When I saw my nephrologist in June, he said I am doing so well that I don't have to see him for a year!!!!! I seem my primary and rheummy every 2 months though and so I think he feels comfortable that they would catch it if something went wrong. Oh, I forgot, in February of last year, I had a HUGE blood clot in my kidney!!!! I guess that's really rare and they said it was so lucky that it was caught--it was found just in time and it was a good thing because I was supposed to go on a business trip the next day and would have been on a plane for several hours. The doctors all told me that if I had gotten on that plane, I probably would have never made it to my destination alive! What a close call.

Anyway, I don't know if this helped at all. If your protein levels are elevated, they will probably just watch it--maybe increase your meds (are you on pred?). I can't imagine that they would do a biopsy unless your levels climb higher. Every doctor is different though.

[kimnyc]

Thanks for your response Renae!

You have had quite a ride in the past few years. My doctor is also not rushing to do a biopsy anytime soon. She is a conservative doctor; she doesn't want to put me on anything too early, too toxic, too anything. The renal doctor said that I was lucky that we found it so early. I spent years knowing something was wrong with me, but I couldn't figure out what it was. I was tested for everything but lupus. And, of course, my other doctors kept telling me I was stressed and needed to relax. If I hadn't believed in myself and kept pushing, I would never have figured any of this out.

I'm on plaquenil now, and that's all. Well, I take Bextra for pain too but that doesn't do much in terms of warding off the disease itself.

Best of luck to you Renae! I'm happy to hear that you have come so far...

[darkwater]

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.