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OK, let me try this again. The last time my post never made it to the board.
If I end up with two now, my apologies.

I'm new to lupus and have been doing a lot of reading about it. Kidney failure is mentioned a lot but how common is it? How many of you here have kidney involvment and what were your first symptoms?
 

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Hello Jesse

One source gives these figures : 70% will have never have any signs of kidney problems, 20% will have some troubles, 8% will suffer kidney failure and 2% will suffer severe kidney failure.
However most top authorities say that 50%+ can have some abnormal protein loss at some point or on occasions. I think it could be a question of how 'problems' are defined. That often seems to mean severe enough to need treatment. The success rate of treatment is of course a very important statistic!

The first signs experienced are usually swelling in feet, ankles and legs; maybe bloating; frothy urine; " pleural and pericardial effusions might be noted and shortage of breath or chest pains are occasionally present"; high blood pressure." When a kidney is functioning at a level of 10% below normal the patient will probably complain of fatigue, look pale and emit a distinct odor "

From The Lupus Book, 2nd Ed. Dr D Wallace p141. I highly recommend this book which is the most detailed reference book written for patients and interested lay people who want nitty gritty. I think a 4th edition is out soon.

Cheers
Clare
 

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Thank you Clare. That is exactly the kind of information I was looking for. Now I know why his nurse asks me at every appt. if I'm having any swelling of the feet, ankles and/or legs and why he did a urine culture for the first time after one year of meds. I had a high protein-to-creatinine ratio during my last blood test (300. Should have been below 150). But he never said a word to me. I think my RD is giving me good treatment but he just doesn't tell me much. It's his style, but I have to depend on what I read and what I can learn here to fill in the blanks. My PCP tells gives me info too (I was having a kidney flare) but I don't see him often. I wish the RD would be a bit more open. I can take it and I need to know what's going on so I can do my part to help in the treatment process. For instance, I'm drinking a lot more fluids now that I know my kidneys were getting cranky.

Thank you for your post and the information. Knowledge is power.
 

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hi i had kidney failure 19 years ago if you are gettin swelin of the ankels (odema) i advise moniterin fluid imput and output to see if thay add up as one of the signs of kidney failure is wontin to drink more
 

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Discussion Starter #5
Thanks Bundy. So far no swelling and my blood work is closer to normal so I think I'm OK for now.
 

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Clare that was good information ! Makes me feel a little better.

I always get copies of my blood work and urine, simply because my rhemo is out of state and the hospital near me I get the labs done at don't ever fax him the results. It is an ongoing problem. So I go and get copies.

Any concerns on there, I address them. Good thing too, because my urine had some protein in it and no one was saying anything about it until I did. Four tests of urine all showed it, you would think someone would say something.

Although we tend to think we can put 100% of our medical issues and test results in our doctors hands, we cannot. It is a matter of not enough doctors and too many patients, underedcuated doctors, or the people that work in the offices, who knows? But things get missed all the time. So we need to be on top of it and follow our care along with them.
 

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Discussion Starter #7
Paula, you are so right. I'm learning each day but there's so much I still don't know.
 

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The vortex of insanity!
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Correct me if I'm wrong, but kidney disease tends to progress slowly. I know they considered me to have 'severe' lupus nephritis when i was 10 - 14 and I had a kidney biopsy every year. It wasn't till the 4th one that they mentioned "moderate" scarring, and their prediction was that I would need a transplant by the time I was 18, if it continued on the same course, which it didn't. I'm not quite sure what my point was. I think it was along the lines of, you have time to address these things and get educated, your kidneys will not fail tomorrow if the meds you're on today don't work right away.
 

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Thanks applesauce, that's good to know. Most of what I've read just mentions kidney problems/failure but don't give the specifics of how often it occurs, or over what time period. This is where forums like this are so valuable. There is absolutely nothing better than being able to "talk" to people who have had, or are currently dealing with the same health issues.
 

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with lupus, some have slow progression of a particular problem, while others can have severe involvement very quickly.

Lupus is a very individual disease - I have read of people on these boards who have experienced a slow downhill slide with their kidney's, but also others who have a much faster progression.

My philosophy is always on one hand be vigilant, but on the other hand don't worry about what may never happen. So long as your doctor is doing regular urine tests etc (which we should ALL have whenever we get our regular lupus tests done) they it is likely to be picked up early IF it occurs at all.

hth

raglet
 

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Hi Raglet. Thanks for your response. My RD only did a urine test once in over a year and that was because I had a high protein-to-creatinine ratio. Should I be getting urine tests more often? I get blood work every two months at this point, but that's it.
 

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Hi Jesse

Yes it should be routine to get urine tested regularly. Its simple, cheap and can save a lot of problems later on. I would strongly recommend that you get your urine tested along with your bloods. Most Rheumy's worth their salt will check urine as a matter of course.

I get mine checked every time I have an appointment (which at the moment is six months apart). I always remember my Rheumy telling me at my first appointment that whenever I have an appointment to make sure and tell the nurse that I need to give a urine sample as its often overlooked.

I also have dipsticks that I use occasionally at home (I must say I am very bad at forgetting to use them though:blush:).

My GP often sends me off for a full urine screen. Actually he would probably do it everytime I go to him but I dont remind him ;) Too much hassle and bother. Still, its good to know that I can get checked out whenever I want to.

Take good care
Joan:rose:
 

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Discussion Starter #13
Good information. Thanks Joan. I've been really happy with my RD overall but this oversight concerns me. I'll be sure and stay on top of it.
 

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Hi again Jesse :)

I think thats a sensible approach. Just stay on top of it. No need for panic or over anxiety - just keeping a concerned eye is good :)

Take care
Joan:rose:
 
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