r/IgANephropathy

Hi everyone,

I am 37 years old and have been living with IgA nephropathy for around 3 years.

My kidney biopsy showed IgA nephropathy with crescents (Oxford classification M1 S1 E0 T1-C1), with approximately 20–25% interstitial fibrosis and tubular atrophy.

My creatinine was usually around 3.5–3.6 mg/dL. About two months ago, I experienced severe dehydration, which caused my creatinine to rise. In the past, whenever I experienced dehydration, my creatinine eventually came back down. However, I have not had a follow-up blood test between that episode and today.

Today's blood test shows:

• Creatinine: 4.39 mg/dL
• eGFR: 17
• Urea: 89 mg/dL
• Potassium: 4.32 mEq/L
• Calcium: 7.94 mg/dL
• Phosphorus: 4.60 mg/dL

My current treatment includes controlled-release budesonide (Iganef) 9 mg, blood pressure medication, calcium tablets, sodium bicarbonate and febuxostat. My BP is generally around 130/92–94.

I am worried because my creatinine has not returned to its previous level, as it did after earlier dehydration episodes.

I would appreciate hearing from anyone who has experienced something simila

Wondering why this isn’t discussed more on this sub.

I was diagnosed with IgAN 30 years ago. I spent the first 5 years in steady decline. Back then it was all about Creatinine levels and 24 hour urine readings. I was having constant gross hematuria with the slightest infection and my 24-hr urine protein numbers were approaching 2000. Then I had a tonsillectomy. I was fortunate enough to have an ENT who knew and guy that had benefited from the procedure (since it was and may still be outside of the approved standard of care) and he was willing to do it.

Within a year my urine protein levels were drastically lower, my creatinine levels never elevated, and I’m now at an eGFR of 70-80.

Just wanted to share and encourage people to check out the research. My current nephrologist said it isn’t common in the US but should be.

Previous poster linked this:
https://academic.oup.com/ndt/article/40/Supplement\_3/gfaf116.0201/8294940

Key Study Findings
Higher Remission Rates: Early overall remission reached 95.2% in patients receiving tonsillectomy plus immunosuppressive therapy (TE + IST) compared to 72.6% with immunosuppression alone. The time to remission was twice as fast in the combination group. [1]

Reduced Disease Progression: Disease progression (defined as a >40% decrease in estimated glomerular filtration rate or end-stage kidney disease) occurred in only 3.5% (3 patients) of the TE + IST group, compared to 28.9% (39 patients) in the control group receiving immunosuppression alone. [1]

Adjusted Risk Reduction: In Cox regression and matched analyses, the combination therapy significantly lowered the probability of kidney disease progression by roughly 80% to 87%.

So my mother's side has adpkd like almost more than 50% of the people have it and i am seeing a pattern here
like my mother had really weak knees and other joints, her joints would make noise everytime she would walks,
she could not sleep properly in her final years (prob high urea) or something
she also could feel any taste in her late final years
and may people in my family (from mother sides) have really weak joints
i mean fingers make noise when they make a fist, knees making noise
even i have similar ones, jaw clicking too
are these things inter related as well? or my mind is superimposing pattern when they are not related to each other?

Can I consume milk/tea/coffee?

My IGAN is stable currently. Only microscopic hematuria and no proteinuria. Biopsy showed minimal IGA deposits.

I just got prescribed Trutakana. Ive been on Filspari and Tarpeyo for the last 4 months. I was having some dizzy/fainting spells, difficulty breathing and pretty bad exhaustion but most of those have gone way down (assuming I follow my diet and dont drink alcohol) but other than that not bad.

Any experiences with Trutakana that you can share?

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I'm a 27-year-old male. Yesterday I got the result of a routine urine test:

- Urine albumin: 92.8 mg/L

- Urine creatinine: 2.58 mmol/L (low, so the sample was dilute)

- Albumin/creatinine ratio (UACR): 36 g/mol (normal is under 2.5-3)

- The lab auto-labeled it "A3"

Context:

- I had a fever and viral respiratory infection for about 2 weeks, mostly last week, with mucus and some shortness of breath. I still had mucus on test day.

- My last night shift ended Friday morning, then 2 days off. The sample was first-morning urine on Monday.

- Kidney function has been normal on blood tests: creatinine 83 µmol/L with normal eGFR in April, and creatinine 1.00 mg/dL with eGFR 106 in August. Serum albumin 4.6, HbA1c 5.2, fasting glucose 87.

- LDL is high at 187 (total cholesterol 252). Blood pressure not measured yet.

- I have asthma and avoid NSAIDs. I lift weights and took 3 g/day creatine, which I've paused for now.

I plan to repeat a first-morning UACR 2-4 weeks after I fully recover, and see my GP.

Questions:

1. Has anyone had a high UACR after a fever or infection that came back normal on retest? How long did it take?

2. Is a ratio this high plausible from fever alone?

3. Is there anything else I should ask my GP to check?

I know I need a retest and a doctor. I'm just looking for experiences and what to ask for. Thanks.

Looking for advice/experiences from parents whose children have dealt with unexplained blood in their urine, IgA nephropathy, or something similar.

My daughter is 7. Here’s the short version of what we’ve been dealing with:
December 2023: Urinalysis was completely negative for blood and protein, and kidney function was normal. This was an ER visit for another reason.
June 6, 2026: visible blood in urine. Went to ER. Urinalysis showed 3+ blood and >182 RBC/hpf. Treated for a suspected UTI, but the urine culture came back with no growth.
June 15: still visible blood so back to another ER. This was the only time slight protein showed up in her urine. No blood on that urine test. Ultrasound suggested a few tiny (around 2 mm) non-obstructing kidney stones.
June 30: 24-hour urine showed very low urine volume (490 mL) and elevated CaOx saturation.
July 9: CT was completely normal with no stones, making us question whether stones were actually the cause of the bleeding.
The blood continued to come and go. By August, nephrology was considering things like IgA nephropathy or Alport syndrome, and genetic testing was ordered. For several weeks afterward, her urine was completely negative for both blood and protein, including on our home dipsticks. Genetic testing showed Alport negative.
On and off blood on home dipsticks for a couple months and then clear (knock on wood) for the past month.
September: She had a failed (not good images) MR urogram as part of the continued workup. Her eGFR has gone from around 92 to 86.8. She has also had some low blood pressure readings, although many have been normal/low-normal.
We just completed another 24-hour urine collection and are still trying to figure out what is causing this.
I’m especially curious about IgA nephropathy because of how the blood can appear and then completely disappear. We would also really like to avoid a kidney biopsy unless it’s truly necessary.
If your child has had IgA, or recurrent unexplained hematuria, I’d love to hear your experience. Did the blood disappear between episodes? Did your child have blood without protein? How were they ultimately diagnosed, and did they need a biopsy?
Not looking for a diagnosis — just hoping to connect with parents who have been through something similar and learn what questions we should be asking. ❤️
I think this length is much more likely to get read while still including the >182 RBC/hpf → suspected stones → clean CT → intermittent blood → IgA/Alport workup sequence that matters most. Please send any and all advice my way. Thanks so much.

Does anyone else suffer from joint/body pain??

My back, hips, knees ache!!

I have isolated hematuria that started two years ago. No proteinuria yet. My biopsy showed minimal Iga deposits. I don’t know how to deal with this microscopic hematuria

Went in for a normal annual physical blood and urine test. Flagged I had a good amount of protein in my urine. Went to a nephrologist, got my 10 vial blood lab and fancy pee protein tests done. My doc was very convinced I had iGa even before the tests based on how I had foamy urine.

eGFR: 110

Blood Pressure is super normal.

CRP was measured at 3mg/L

UPCR: 1,135 mg/g

UACR: 692 mg/g

I then got a biopsy this week which confirmed I had iGa.

Oxford Classification (M0 E0 S0 T0-C0)

Only 5% "interstitial fibrosis and tubular atrophy"

Global glomerulosclerosis 2/62

ALL THAT BEING SAID, it doesn't seem like I'm in a bad spot here. I'm being prescribed 10mg of Farxiga as the initial treatment. Doc said a low sodium diet can help but the medication will have a larger impact on my health overall.

Im very new to this and dont want to use ai shits to help me understand the severity or like how I should be feeling, would rather real people with the condition weigh in.

Im 28 and 155lbs.

I would love to know like how likely it is if I follow my dr's orders and shit that I will avoid needing dialysis or transplant. That sounds so scary.

I would also love to know on Farxiga, seems like
pissing is a new hobby. I havent started it yet but how long does it take for you to stop pissing a lot? 3 weeks? Any tips for avoiding utis?

I love a night out with the lads, can I have 2-3 beers on a Friday on my meds and shit and be all good?

Appreciate you all!

I just want to share how important proper hydration is to getting an accurate eGFR test result. It took me by surprise even though I already thought I knew all about the importance of drinking lots of water and flushing the kidneys.

My eGFR had remained stable for years despite persistent proteinuria and hematuria, however it recently dropped from 88 in Aug 2025 to 69 in April of 2026, which was a bit of a surprise but not super concerning, however it was the first time I had ever seen a fluctuation that large.

A subsequent test in July 2026 saw it rebound back up to 77 for which I experienced relief, but it wasn't in the 80's anymore and I thought "well I guess I've having some decline, but nothing serious and for my age at 62 not too bad." I was prepared to accept that my eGFR would not stay high permanently with my condition, but the decline was slow enough to make me feel that I was one of the lucky ones.

But then another test in September in association with me feeling ill having low energy, weight loss and various other symptoms provided a new result of an eGFR of 61. Now I was getting a bit more concerned but rationalized that it's still in the normal range and it's still not too bad. But I still had a niggling worry at seeing my numbers drop from from 88 o 61 in one year.

Because I had come in with the concern about my feeling of malaise, the doctor wanted to recheck my blood work in a couple of weeks and recommended I drink plenty of water and stay hydrated before the test. He suspected I may have been dehydrated from whatever was making me feel so bad, and wanted to follow up.

Well to my surprise and to his credit, he was right. I drank around a liter and a half of water in the 2 hours leading up to my bloodwork and the result was a new eGFR number of 82. My creatinine number also dropped significantly as well, back into the normal range from 113 umol/L to 88.

It turns out that the most likely explanation may have been when I switched to chlorthalidone from hydrochlorothiazide about a year ago. Apparently chlorthalidone is a more powerful diuretic than HCTZ and my hydration habits under HCTZ were obviously insufficient under chlorthalidone.

In any case this was a huge learning by experience moment for me, and I hope you all drink lots of water in general, but particularly before you get any bloodwork. Sometimes a major drop in eGFR can be from something as simple as that and nothing to worry about.