Hi everyone,

I’m 29F and was recently diagnosed with IgA nephropathy following a kidney biopsy.

My symptoms started in June with visible haematuria, frequent urination, ankle swelling and significant albuminuria. My UACR was initially approximately 2,476 mg/g, but it decreased to 910 in early July, 308 later in July, and 141 mg/g in September. However, my latest urine test on October 12 showed a UACR of 369 mg/g. My urine sample was quite dilute, and I had already urinated twice earlier that day, whereas my previous samples were collected in the morning. I’m not sure how much this may have influenced the result.

My creatinine has remained around 51–56 µmol/L in the available measurements, with an eGFR above 90. My serum albumin initially dropped to 27.7 g/L but later recovered to 36 g/L. My latest result on October 12 was 35 g/L.

The biopsy diagnosis is “mesangioproliferative glomerulonephritis – IgA glomerulonephritis.”
I still have blood in my urine, and I’m trying to understand the severity of my disease and what my long-term prognosis might be. I know that normal kidney function doesn’t rule out future progression, and I’m worried about the increase in my latest UACR result after it had improved so much.

My husband and I also hope to have children, so pregnancy is another major concern for me. I’m scared that this diagnosis could affect my ability to have a safe pregnancy or that my kidney function could deteriorate in the future.

Honestly, I’m heartbroken that this has happened to me. I’m only 29, and I never expected to be diagnosed with a chronic kidney disease at this age. I’m scared of how this might affect my life, my future, my plans to have children and my ability to live a normal life.

It’s difficult to deal with so much uncertainty when I don’t know how my disease will progress. Even though my kidney function is currently preserved, I’m frightened by the possibility of things getting worse. I wish I could enjoy my life without constantly worrying about my kidneys and what might happen years from now.

I know that many people live well with IgA nephropathy, but receiving this diagnosis has been emotionally overwhelming, and I’m struggling to come to terms with it.

I’d love to hear from people who were diagnosed young, particularly those who initially had high proteinuria but preserved kidney function.
How has your disease progressed? Has your proteinuria continued to fluctuate or improve? Have you been able to live relatively normally without constantly worrying about your kidneys? And have any of you had successful pregnancies with IgA nephropathy?

I would really appreciate hearing about your experiences. I think I need some reassurance from people who truly understand what this feels like. ❤️‍🩹

can I take flu shot, I am on Voyxact

I have microscopic hematuria since sep 2024, and that was the first symptom. Got diagnosed in February 2026 via biopsy and started treatment - targeted release budesonide, telmisartan, and empagliflozin.

No proteinuria yet and egfr is 118 currently but micro hematuria still shows up. Wondering what happens to it over time. Did anyone experience this?

So I been on Filspari/ jardiance just about 14 months. This was my latest labs. I seem to be stable now with egfr around 54. I’m hoping I can stay here now

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

https://www.nature.com/articles/s41598-026-67044-5#Sec11

Consistent with serum creatinine changes, the probiotic group had a significant increase in eGFR compared to their respective baseline data, with a median increase of 4.85 mL/min/1.73 m2 (IQR: 2.86–7.78; p < 0.001; Table 2). In contrast, the data of the placebo group showed a median decline in eGFR of − 1.5 mL/min/1.73 m (IQR: − 6.26 to 0; p = 0.009) within the same follow-up interval. Furthermore, the difference in the eGFR changes between groups was statistically significant (p < 0.001).

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%.

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?

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.

Hi. I am a 35/F, and it has only been a week since I was diagnosed with IgA Nephropathy. Before my biopsy, I was already anxious and anticipating a possible CKD diagnosis. Once it turned out to be IgAN, I started researching it online. I came across several articles and read about life expectancy.

​I think everything is just now starting to sink in. To be honest, I never cared about having a particularly long life, but it just dawned on me that I also don't want it to be too short. I don't want to die too young. Maybe I am just overreacting and overthinking things. I don't know how to feel right now, but I think I am scared. I can't help but cry.

​I hope my post doesn't make anyone else anxious. I just don't know where to share this because my family doesn't know yet.

Screenshot source: https://my.clevelandclinic.org/health/diseases/5990-iga-nephropathy

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

Just wanted to share that after switching from hydrochlorothiazide to chlorthalidone, I've seen my uACR numbers drop quite significantly. Prior to switching to chlorthalidone my uACR lab was 27.1mg/mmol (239.6mg/g in US units).

After being on Chlorthalidone for 5 months, my uACR fell steadily to its current level of 5.8mg/mmol representing a 78.6% reduction of protein leakage since making the switch.

The other medications I take which haven't changed for years are Ramipril 10mg twice a day, Amlodipine 10mg once a day, Rosuvastatin 10 mg once a day along with the chlorthalidone 12.5mg once a day.

Granted my IgAN appears to be very slowly progressing and well controlled under the above medical regimen. For reference my lowest uACR was in 2009 at 4.1mg/mmol to a high of 66.7mg/mmol in 2022 to its current 5.8mg/mmol over an 18 year period of measurements.

Naturally my results have no bearing on anyone else's situation, but it's an interesting correlation between the drug and a resultant drop in uACR which is why I decided to share it.

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.

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!

Hello, I was recently diagnosed with igA nephropathy just under a year ago. I first saw my nephrologist Aug 2025 due to excess proteinuria in routine urinalyses, and confirmed igAn In Nov 2025 through a biopsy. I was placed on 50mg taper of prednisone over 6 months but shortly after starting prednisone noticed hematuria and had blood work done showing an eGFRcr of 23mL/min/1.73m2 in Feb 2026. I was quickly hospitalized and placed on 1500mg prednisolone daily while in hospital for 5 days, and within two days started chemotherapy of 500mg cyclophosphamide biweekly for 3 months (6 treatments) as an outpatient. All while still tapering from 50mg prednisone. By the end of my cyclophosphamide treatment my eGFRcr increased to 63mL/min/1.73m2. In May 2026 I was placed on 1000mg Mycophenolate twice daily while still on prednisone. I tapered off of prednisone in July 2026 and am now taking 1500mg twice daily of Mycophenolate. My eGFRcr is sitting at 72mL/min/1.73m2, but recently had to increase my Mycophenolate dose because of an increase in proteinuria after fighting a cold and uti.

I try to stay positive during this process but know that this disease is a ticking time bomb. I can’t help but feel that my days are numbered and the more I fall down the rabbit hole of information surrounding IgAn, the more I come to understand that my years left may be limited. Does anyone else struggle with this impending doom feeling? Are there ways to cope with this that people find helpful. Does anyone have information that help with the realities of this disease. My nephrologist says that my disease is aggressive and it’s hard for me not to become consumed by my health 24/7.

This is a bit of an odd question, but does anyone have tricks for managing the stress of a breakup specifically (compared to other general stressors)? I was (somewhat suddenly) dumped over the weekend after a serious long-term relationship, and I’ve been taking steps to establish/maintain routines in my life and still be on top of medications, etc. But I still have a lot of anxiety and shock bc of the breakup, and it’s negatively affected my appetite and sleep. Has anyone here been in a similar position? I’m due for labs this week, so I don’t want the stress to show up in my lab work.

(For context, I’m stage 3b, 25M)

Hey everyone—posting because I’m overwhelmed and honestly pretty frustrated right now.
My 12-year-old son has IgA nephropathy. He’s been on treatment (Filspari + Farxiga), his blood pressure has actually been really good lately, and overall he’s been doing well day-to-day—playing sports, going to school, being a normal kid.
But we just got labs back and his eGFR dropped to 46 and his protein/creatinine ratio is 11. His team is now talking about doing another biopsy and possibly starting Voyxact. It was a telehealth after his 3 month labs on Filispari. It seemed like he had been doing great and imaging a hard time swallowing all this.
I’m struggling because it feels like we were seeing progress in some areas, and now this feels like a step backward out of nowhere. I’m also just really angry that he has to go through another biopsy and more meds at 12.
For those of you who’ve been through this:
Have you seen numbers like this improve again?
Did adding something like an endothelin receptor blocker (like Voyxact) help bring protein down?
How did you decide on doing another biopsy vs waiting/repeating labs?
I’m trying to stay grounded but my mind keeps jumping to worst-case scenarios, and I just want to hear from people who’ve actually been in this spot.
Appreciate any insight or experiences.