Leaking Protein but have full kidney function??

I was wondering if anyone out there is leaking protein and still have full kideny function? I am leaking about 4g/day and have full function. I have tried various drugs with no luck. The lowest I have been is 2g/day.

I wanted to know if anyone one else was in my shoes, and if so how long have you been this way? Amount you leak, and current drugs you take.

Thanks.

Report post

20 replies. Join the discussion

How are you tracking your kidney function? Mine is now 'normal' meaning my GFR is over 60, but it has been much worse over the last year (I think the worst was around 20). I am maintaining remission on cyclosporine but continue to leak some protein periodically.

Report post

I track it through my GFR which is at 98 right now. Also looking at Bun/creatinine ratio and Creatinine, Serum.

My was on cyclosporine, but my neph does not like to keep me on those types of drugs for more than a year at a time. It seems that some people are on cyclosporine low dose for years? My neph believes the side effects from the drugs could be worse than the kidney disease itself for me.

So are you on a low does of cyclosporine, and what is your protein leakage?

Report post

Well I have been spilling over 8 for 6 years. My GFR is now at 20. I'm still good with bathroom functions if that is what you are wondering. The swelling is always there.

Report post

I think I am on what is considered a high dose of cyclosporine - I started at 100 mg twice a day, but we lowered it to 100 mg in the morning and 50 mg at night to try to get around some of the side effects. My BUN/cr ratio and serum cr are higher than the normal range but not terribly so unless I am 'flaring' as my doctor calls it - leaking extreme amounts of protein. That has not happened since I have been on the cyclosporine. I do not know how long I will be on the cyclosporine - my doctor said he won't even try to start weaning me off it until later this year (2012).

Report post

I feel so sad when I read these posts. we all need to find answers. I am not on anything as I cannot take the meds. My kidney function is at least 60% on the low end but I have severe nephrotic syndrome with severe swelling. I have episodes. When I get a virus everything goes out of control so I am addressing my immune system, super foods etc.

I'm on a quest to find answers. I wish you all extreme wellness in 2012, aloha

Report post

I also have normal kidney function (creatine approx .78 and GFR greater than 60) but do generally leak 1+ protein (in the 50's for random urine). Unfortunately last labs were 2+ (109 protein). The very low protein diet has been helpful for me in controlling protein (3+ prior to diet). I do take a low 3 mg dose of prograf, Avapro for blood pressure and occasional diuretics. Would love to not take any prograf especially since Dr. Walser's patient were not taking an immunosuppressant but when I tried to stop protein level went back up.
Good Luck,
Check out posts regarding the low protein or very low protein diet on this website for further information

Report post

I have been leaking over 5g a day with normal function. I am on bp meds and Lipitor And have no swelling! Doc says I am in some kind of remission, diagnosed over 5 years ago still working God is good! But I do live in fear of waking up to those huge feet!

Report post

I have normal kidney function, my creatinine is at 0.66 within my range, 0.57-1.01. But I am spilling protein 3-4grams daily. I was diagnosed 4 months ago and still on prednisone taper. I take 10 mg lipitor everyday and 5mg blood pressure medicine only when I need it. I also take supplements like an antibiotic, pepsid, and vitamin D and calcium. The doctor says that spilling under 3 grams a day is considered okay. So I'm hoping I can get there. want to get off these medicines!

Report post

Good Luck,
I feel the same- no medicine would be great!

Report post

My GFR is >60, my creatinine is around 1.06, but I spill around 14-16 grams of protein a day. I've been doing this for the last 6 months. Im no longer on any immunosuppressants (tried prednisone, cyclosporine and Prograf...none worked) so I'm taking bp meds, happy pills, Lipitor and lasix and metolazone. Most of the time I feel pretty OK (I guess considering what other people feel like) but some days I'm just really really tired. And swollen. Oh Lord...so swollen sometimes.

Report post

storaloppan, ask your doctor about Achar. The spelling might be off. Search for it on this site, its something new that is being tried, my neph has had good results with it so he says.

Report post

I asked about it last year when I first heard about it, but my neph is pretty conservative. He's not too keep on trying new drugs on his patients. I'm moving my care up to Mayo in March so we'll see what they say then. At this point, I'm totally cool with it.

Report post

I have had idio. memb. neph. for almost 10 years and I still have excellent kidney function in spite of very high protein leakage levels (7-17g). I have taken prednisone and cellcept and nothing seems to phase me. I've never had much swelling, probably thanks to Lasix. Because my doctor believes I must do something (I can't be this lucky forever), I'm about to try Acthar but am not looking forward to 6 MONTHS of this self-injected (expensive) drug that makes your body produce its own steriod. The side effects are supposed to be similar to taking prednisone -- I gained weight in my upper body, neck, face -- I developed what they call "moon face" before it was over, and I was terribly irritable and depressed. If I bumped into anything with my forearms, it made huge dark bruises. But, if it will help save me later, I'm going to give it a try. Acthar, for some reason, appears to work better perhaps because it is your own steriod being produced.

Report post

I have had MCD 3 times, am currently in complete remission almost a year, and have had full kidney function the entire time. My neph and naturopath believe my MCD was directly triggered from labor and delivery of each of my 3 kids. When I read everyone's stories on here, it really boggles me that everyone's circumstances are SO different, yet we can all relate with treatments, side effects, etc.

Report post

Hello , Im in the same as you , I don't understand your mesuremets but my protein leak is at the highest was 6,500mg per day, this is all very new and confusing still. I take cholesterol tabs and high blood pressure tabs. My doc mesures my Albmin in the blood and it has been as low as 23 and should be arount 35 . I have been taking prednisone and Neoral for the past 12 weeks but I cant stand it and have gone of it so my next visit to the doctors will show and increase again in protein loss. I feel concerned because I can feel that I not right and without energy. Apprently I have good kidney function.. I'm not sure wich way to go ... I am, looking for some natural thing that could just keep everythink under control.. Got any ideas.. thanks

Report post

Can you tell me more about Achar.. What is it

Report post

linda717 - do you still leak 5 G of protein? I assume not, or your dr. wouldn't call it a remission. I was curious if you leaked 5 G of protein, and didn't have swelling with that. I'm leaking over 10 and have lots of swelling.

Report post

Hi there

I am losing around 8g protien, the lowest it has ever been is around 4g. I was diagnosed 5 years ago and my kidney function is still over 90%. I have also been on several drugs but none have been successful, but my kidney's seem to keep holding up.

Report post

Hi Alfonso,

I too have 100% kidney function and I still leak protein. My current protein spill is low. I am leaking anywhere from 1 gram to a half a gram. A few years ago I was leaking 4+ and feeling lousy so I sought out a new Nephrologist and a new treatment plan, which has succeeded in improving my numbers. I was first diagnosed with this disease in 1989.... so that's what.....23 years ago. In all of that time I have never NOT had 100% kidney function which amazes my doctors. I've been through 2 rounds of prednisone and chlorambucil/cytoxin. The first round I had full remission for a couple of years. The second round wasn't as successful but it scaled back the protein loss. I've been pretty fortunate with the progression of this disease, but that's not to say it's been a bed of roses.

I am currently taking 500mg of CellCept 3 times daily which was recently decreased from 750mg 3 times daily. In addition to the CellCept I am taking 50mg of Cozaar which was reduced from 100mg and 75mg of Tekturna reduced from 150mg. I have also gone gluten free and in my opinion and based on my experience, it has made a major difference I how I feel and how much protein I leak. I also try and keep my sodium to as little as I possibly can and I eat very very healthy. I also jog and lift weights. In one year of going gluten free and working out, I've lost 33 lbs and I ran the Army Ten Miler this past October and I feel good. I do still have bad days and it's usually because I'm either getting sick with something or I've slipped up on my diet and indulged when I shouldn't have. I still dream of waking up and having this whole chronic disease go alway, but I also have a fear that I'll run out of "luck" and my kidney function will begin to decrease. This disease has taught me that patience and management are essential in living day to day and that you are your own best advocate for your health. Do whatever you can to help yourself and never stop fighting.

Report post

I've got protein leak and full kidney function...

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Discussion topics

Community leaders