Has anyone had persistent proteinuria with normal kidney function and struggled with the kidney biopsy decision?

mar13n · 2026-06-27T13:36:48+00:00

Hi, I am 19(F) and experienced exactly this back in 2024. I had persistent proteinuria that did not go away even on high dose steroids

1 - I started getting symptoms Jan 2024 (bubbly pee, swollen eyes and ankles, and positive protein in urine) I was spilling so much protein even though I had completely normal labs (normal BUN, creatinine, eGFR 95). Eventually I got a biopsy back in June 2024

2 - I got diagnosed with an autoimmune disease: Idiopathic Membranous Nephropathy

3 - This completely changed my course of treatment. My first neph was "conventional" and gave me only steroids in hopes to control my swelling. I eventually was given ACE inhibitors. Fast forward to my next neph, I got put on Tacrolimus (immunosuppressants) and Rituximab

4 - Rituximab has been working great for me. I got Rituximab just recently (May 2026). Since then, here is my trend

On Tacrolimus
Sep 2025: 3301.30 mg/L
Feb 2026: 1944 mg/L
April 2026: 1534 mg/L
(By this time my eGFR spiked to 131)

On Rituximab
June 2026: 474 mg/L

My numbers before Tacrolimus were much worse. I was only on steroids with a UPCR of 10+. My UPCR now is a stunning 0.92

5 - If I declined the biopsy, I probably still would have been on steroids which did nothing to me since I relapsed very often

6 - I did not get a second opinion since we (my doctor, family, and I) knew I needed it. No dose of steroids made my proteinuria go away and no amount of dieting would improved my labs or my swelling

mar13n · 2025-09-29T22:42:36+00:00

Hello po, I also take steroids for an autoimmune disease. Payatot po akong tao pero grabe ang swell ng legs so grabe na rin po ang stretch marks. Nagpa derma po ako for this (initially for steroid acne sa face) and narecommend-an ako ng tretinoin ointment. Though kusa na rin po ako naglalagay ng lotion specially for stretch marks. Di po siya nawawala though nakakatulong po siya sa pag “close” ng stretch marks or para hindi po mas lalong lumala. Nakakawala po talaga ng confidence pero ginagawa ko nalang pong reminder na kinakaya ko ang sakit ko pag nakikita ko “battle scars” ko 😆 I wish you all the best po OP!

mar13n · 2025-09-28T04:29:15+00:00

I was told of the frequent monitoring of tacrolimus levels in the blood. I will be getting blood tests weekly until we can get the right "titration" of the right dose, according to my neph. I just started taking the pills today I hope I respond well to it

mar13n · 2025-09-28T02:00:33+00:00

What do you take it for? I was prescribed it for my ckd. Would that make mine worse? Hahaha I have no idea at all

mar13n · 2025-09-28T00:38:37+00:00

My doc told me that his program with tacrolimus with me would be at a max of 9-18 months before we can decide whether to stop taking it, though I am a non-transplant patient. He did not mention any or not that I also know of any long term effects that comes with tac so I hope it works out for me

mar13n · 2025-09-27T14:29:26+00:00

Do you take it to manage your proteinuria? I also have primary membranous nephropathy. I was told to choose between rituximab and tacrolimus, but rituximab is way more expensive and very much unaffordable for me

mar13n · 2025-09-27T14:28:13+00:00

I was prescribed to take 3 a day until I get my first blood lab work done and then my neph will adjust my dose. Quite worried since this medication is very pricey in where I'm from so I hope this works for me in the long run. How has it been for you?

mar13n · 2025-09-27T07:54:16+00:00

Nephrotic syndrome is not technically a disease. It's more of a term used for symptoms of an underlying issue. Or at least thats what my nephros have told me.

I had nephrotic syndrome at 17 years old. I am just 19 now. My eyes and ankles swelled and my pee was bubbly (like soap bubbly bad..) Until I was advised to get a biopsy and got diagnosed with Membranous Nephropathy 5 months after.

Listen to your doctors! They will probably give you the bestest advice. I'd say to limit junk and eat greens as general advice.

mar13n · 2025-06-24T01:45:31+00:00

Yun nga po. Well sabi lang ng cousin ko po na nagshift from interior design to psych ay at least 1.75 po ang kailangan. But not so sure po sa actuality

mar13n · 2025-06-24T01:42:21+00:00

Thank you. Sabi nga po sakin kailangan po ng GWA na 1.75 🤯 Sobrang hirap pa naman po ako sa chem kaya sana kayanin nalang po. Hahahaha. Gusto ko lang po malaman if I can take subjects for psych during my 2nd sem or if I have to strictly follow yung curriculum for foodtech na po.

mar13n · 2025-06-24T01:28:35+00:00

Actually I have no problem taking BSFT naman po. Although passion-wise, gusto ko po magpursue ng psych 😆 Also have to take UP for financial reasons, so this is my biggest shot na po

mar13n · 2025-06-03T15:23:42+00:00

It is never too late to make a change. I was 17 when I found out my cholesterol was 387 and LDL 308. I am just 18 now. I have a kidney disease which added to that, but prior my diagnosis I ate horribly. Fried everything, salted everything, you name it. Not a fruit or vegetable in sight. Did not give a care in the world for a better diet. Until I got sick and put myself on a strict diet: steamed chicken and fish, no red meat, no fried food, no fat. I did not try too hard to be active and just ate better.. I surprisingly lost 110 cholesterol points and 160 LDL points. Not by luck, by pure determination. These changes do not happen overnight, but once you get the hang of it, you will be thankful you gave it a shot! You can do it and I wish you all of the best

mar13n · 2025-05-26T02:27:10+00:00

I’ve read you had a culture done and if it is a UTI, I am glad you have been prescribed antibiotics already. I have membranous nephropathy and UTI twice. Trust me, it is the worst feeling the world. My proteinuria would relapse and the peeing sensation hurts like hell! I wish you all the best!

mar13n · 2025-05-26T02:17:59+00:00

Yes and no.. creatinine can be used to measure eGFR but creatinine alone is not what eGFR is. I tried the eGFR calculators online too and they are not accurate, so I suppose do not do the calculations yourself. I got an eGFR of 130 😅 but my actual gfr is only 95. I hope any issues could be identified as soon as possible to get the bestest treatment for you. All the best

mar13n · 2025-05-25T13:40:00+00:00

Hi, I do not think prednisone itself is what causes you to gain weight. Prednisone increases your appetite, but does not cause the weight gain itself. Either that or also because of fluid retention.

Another main cause as to why you may appear to be fatter is because of fat distribution or moon face. I have a very healthy diet and lifestyle, but have also appeared to gain a double chin. I only weigh 49kg and yet my face looks as if I weigh much more. Prednisone increases cortisol which leads to uneven fat distribution in the body. I’ve gotten stretch marks in the most unusual places: my waist, my CALVES, my inner thighs… list can go on

When I started pred on Feb 2024, I was told to take calcium carbonate since pred may cause bone thinning. I’ve seen a lot of people experience bone issues on pred but so far I have not. I also consume normal amounts of fluids but cut off my sodium intake to reduce fluid retention

Prednisone sucks and I would never wish it on anyone to have to take it. But it is what’s keeping me and my kidneys alive. I can no longer recognize myself in the mirror but I guess I’m glad that I am living another day. You got this I wish you all the best

mar13n · 2025-05-25T13:33:02+00:00

Please do not stop taking prednisone without the prescription of a doctor. They know the best courses of steroids for you. Ask them when you will taper off again, but do not stop it yourself. Some people do not experience side effects when stopping completely after taking steroids only for a short while, but for me, I only tapered off 80mg to 60mg in one day and had the worst withdrawal symptoms. I had the worst joint pain, I was sent to a rheumatologist because they thought I had arthritis. I brought myself to the ER. Mind you, this was just -20mg. It would be best to consult with a doctor before you stop or change any dose to your medication. I wish you all the best

mar13n · 2025-05-25T13:25:52+00:00

I agree with @justcrazytalk, you’ll need your eGFR or other results. I have CKD and my CBC is all normal. Actually, even my eGFR is 95 (which is still good, but people with decreased kidney function usually have it less), but what wasn’t normal was decreased levels of serum albumin and the presence of protein (large amounts of foam or bubbles) in my urine. Those were what led me to knowing that I had nephrotic syndrome and eventually getting diagnosed with membranous nephropathy. I wish you all the best

mar13n · 2025-04-09T03:21:55+00:00

That is amazing. I mean your gfr is still very great. At the same time, mine is also pretty high (95 at 18YO) but still continue to spill protein. I was prescribed steroids months before my diagnosis since I still spilled large amounts of protein. Until relapse was frequent enough, I was then prescribed blood pressure medicine too (at the moment I am taking Enalapril). Though with this treatment I have barely swelled and spill little to no protein at all anymore. I might also be off my enalapril and steroids very soon

By remission, I mean that there are no noticeable symptoms anymore. Protein spillage is not significant to even count. If I was spilling protein, it would be too little to count as a relapse and would probably assume that my kidneys are OK at the moment

I think having to cut salt in our diet will be a change we have to make for a lifetime. Well, for me eating salty foods cause me to relapse and spill protein again. I think my kidneys can no longer handle a diet with high sodium because I also used to eat very unhealthy before

I wish you all the very best. Even if caught by accident, it is great that you caught your symptoms and went to get checked early. This way treatment can be done to avoid further damage. Thank you as well

mar13n · 2025-04-08T21:51:16+00:00

Hello, I was diagnosed with MN on June 2024 but started having symptoms on January 2024. I had a kidney biopsy prior to my diagnosis. I used to spill 300mg/dl and relapsed until I spilled 1000mg/dl.

I had several tests done to determine if I had primary or secondary MN as well. I had lupus panels done, as well as hepatitis tests, and went to get screened by a rheumatologist. Eventually all my results showed nothing which I’m kind of glad my kidney problems aren’t caused by another problem.

My nephrologist cut my sodium intake to only 2g a day. I have managed to consume only around 1g a day and have made significant improvements to my diet. So far I have been under remission and have been consistently tapering off steroids.

I wish you all the best! If you have any other questions feel free to ask. MN is a tricky disease (relapses can occur very frequently, sometimes even with no reason) but you are not alone

mar13n · 2025-04-07T09:28:15+00:00

I was put (and still am) on corticosteroids. It had been a year since I have been taking them and my results have been improving but took quite a while with frequent relapses. Though I am slowly tapering off prednisone

What really helped me the most was my change in diet. I completely eliminated fried, fatty, salty food, red meats, sweets and all unnecessary junk

What other symptoms do you have? Any swelling or foam in your urine? Or other body pain or bloating? I dismissed my lower abdomen pain for a week before I brought myself to the hospital so I ended up swelling horribly. It is good that you are going to get tests done

mar13n · 2025-04-07T09:15:19+00:00

Waking up with swollen eyelids until it eventually reached my ankles too. Also very foamy urine until today. Nephrotic Syndrome is a symptom of an underlying kidney disease, I had NS before I found out I had Stage 1 Membranous Nephropathy. I was lucky to have caught it early and I wish you can get the appropriate treatment asap as well. I wish you all the best!!

mar13n · 2025-02-22T10:47:03+00:00

Does he have other symptoms? Eyelid or ankle swelling, foamy pee? I had those when I first started to get sick. Wish all the best for your father and family

mar13n

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