r/IgANephropathy

How long would you say that your average flare up is after getting flu/covid? And what are your symptoms like during the flare up?

Is there any real campaign to raise awareness and support research of the link between COVID, COVID vaccines, and IgA Nephropathy? It seems an awful lot of people are finding out they have this “rare” disease in the past few years after living healthy young lives with no symptoms even when very sick with the flu etc pre-2020…

So I have been busy with other things. Yes I know stupid. Trying to fix my sleep etc. Then it dawned upon me. I cured my seasonal allergies by just taking probiotics. Essentially seasonal allergies is just from histamines getting into your blood stream. Simple fix. Then I thought, the bad IGA that we produce is only a problem if it enters our blood stream. I have never ever heard this from any doctor or specialist. So i started googling and that seems to be the case. If the bad IGA doesn´t enter your blood stream it cannot harm your kidneys.

Also there seems to be a number of bacteria in your gut that if in overgrowth contribute. So I have now bought a crap ton of supplements to help stop the growth of these bacteria, and to do a big overhaul to stop any leaky gut that I might have.

Once all the supplements are here I will do a big list with them all and what I think they will do to help the situation.

There is no money in fixing a leaky gut hence, why would doctors even know about this.....

Bonkers.

My IgAN was diagnosed after a post viral illness that caused POTS. I’m at stage 3a and stable but I am having issues managing my blood pressure with POTS. I am prescribed Olmesartan, which made my blood pressure too low so my dr adjusted my dosage to 10mg per day. I’ve been taking just 5mg per day and still experiencing very low blood pressure (yesterday was 80/50) My primary doc and nephrologist both stress that I need to take Olmesartan every day to protect my blood pressure and kidneys but I cannot even get out of bed when my blood pressure is so low. I need electrolyte supplements to manage my POTS but supposed to be on a low sodium diet.
Does anyone have a similar problem managing these conditions together? I saw my primary dr last week and will see my nephrologist in September but neither seem to want to address to POTS component but it is severely affecting my ability to function.

Google says it might be available to us by 2030 but I guess I’ve heard about this since a long while back.
Eventhough it’s available when will a person afford it ?
Human trails are not done yet but they claim that within 2030 it will be available in socialmedia platforms

Due to advanced AI technology will it be available quickly?
What role does AI plays in devoloping this device?

I’m just curious when such a thing is available for all of us what will the Pharma industry do ? As many CKD patients will stop buying the medication and they will have a kidney implant !! I also heard that the kidney implant doesn’t require immunosuppressants in some article

what do you guys think? Anyone knows about this artificial kidney more detailed ? Do you also think that it’s going to change the life of all of us ?

My dad had CKD for 14 years and recently took a brave step to do a kidney biopsy. The result confirmed that he had IGA with oxford score being M0 E0 S1 T0. The biopsy also said he had some remaining inflammation deposits.
Nephrologist wanted to put him on Taperyo. Our concerns were, besides the side effect, that there’s no study beyond the 9-month-trial.
His egfr is 27-32, and he’s 68. Has anyone in this age tried this medication, and how’re you doing after the trial ends?
Is this worth for him to try this medication? Our goal is to avoid him from dialysis as long as possible.
He only takes telmisartan 20mg and maintains a very strict low protein diet at this moment.

Thank you for everyone’s insight!

Hi everyone,

I was diagnosed with IgA nephropathy after a kidney biopsy. My biopsy had a MEST score of M1 E0 S1 T0 and mentioned a perihilar variant.

My biggest concern has always been long-term progression and whether I'm at significant risk of ESRD.

My treatment and timeline

I initially had significant proteinuria, with UPCR reaching around 1.15 g/g.

I was treated with prednisolone 40 mg, which substantially reduced my proteinuria. I eventually tapered off steroids and stopped them in February 2026.

My current kidney-protective treatment includes:

Telmisartan

Dapagliflozin (Dapa) 10 mg

Finerenone (Kerendia) 20 mg

I started Kerendia after 9 May 2026.

Recent kidney function

My recent numbers:

2 Apr 2026: creatinine 1.11, eGFR 92

8 May: creatinine 1.21, eGFR 83

5 Jun: creatinine 1.39, eGFR 70

4 Jul: creatinine 1.40, eGFR 69.7

14 Aug: creatinine 1.40, eGFR 69.65

So there was a noticeable drop in eGFR from May to June, but since June my creatinine/eGFR have been essentially completely stable.

I'm wondering whether the initial decline could have been partly related to the combination of Dapa + finerenone + telmisartan, particularly because Kerendia was started after the May test.

Proteinuria/albuminuria

This is where things have become very encouraging.

My ACR was around 1015 mg/g in March 2025.

More recently:

4 Jul 2026: ACR 27 mg/g

14 Aug 2026: ACR 30.8 mg/g

Today's urine dipstick was negative for protein and blood, with 0 RBC/HPF and no casts.

Potassium is currently 4.4.

So currently I'm around:

eGFR ~70 + ACR ~31 mg/g + negative urine protein + no hematuria + stable creatinine.

I'm actually feeling quite positive about my future now.

I'd especially like to hear from people using Dapa + Finerenone

For anyone with IgA nephropathy who has used these medications, I'd really appreciate your experiences:

1. Dapagliflozin (Dapa 10 mg):

How much did it reduce your proteinuria/albuminuria?

Did you experience an initial eGFR drop?

Did your eGFR stabilize afterward?

How long did it take before you noticed the full effect?

2. Finerenone (Kerendia 20 mg):

How long have you been taking 20 mg?

Did it reduce your proteinuria/ACR?

Did you experience an initial creatinine rise/eGFR drop?

Did the effect persist over time?

Did your nephrologist increase you from 10 → 20 mg, and did you notice a difference after the increase?

3. Combination therapy: For those taking Dapa + finerenone 20 mg + an ARB/ACE inhibitor, how effective has this combination been for your proteinuria?

I'm particularly interested in long-term real-world experiences, rather than just clinical-trial results.

Finally

For people who have had IgA nephropathy for 5–10+ years:

Does my current situation — eGFR around 70 but ACR around 30 mg/g and stable kidney function — look like a relatively favorable trajectory?

I'm obviously continuing regular follow-up with my nephrologist, but I'd love to hear from people who have been through a similar journey.

Thanks!

P.S. This post was written with AI but the facts and details are 100% true.

Does anyone have any experience or insight on Trutakna for IgaN? Side effects? My nephrologist wants to put me on it but a little nervous with this being a newer drug and an injectable. Thank you!

Hi. I am an happy owner of an IGan since 2022.

Went from an egr of 68 to 45 and now 36.

I still feel good and live a normal life. Some days i'm more tired and i can't run the way i did before.

But i'm pretty happy. I read some people start to get dialysis at 25 or 20.

What symptoms should i look for you know if it's time to look for a New kidney or seen dialysis (my nephrologist told me we are still far from this).

Losartan and dapagliflozin haven’t been working for me like my doctor was hoping they would. So he wants me to try the new voyxact. A little nervous because it’s so new. Who here has tried it? Any negative symptoms? Seeing reduced proteinuria? My doctor said he is starting patients on this before steroids now because he’s seeing better results with it. I’m a 34 F. TIA

Diagnosed with IgA nephropathy for almost 2 years, in my late 20s. My vasculitis on my legs have turned really nasty and scary the last year. If the flare up is really bad, it causes me so much pain that I can't even walk. Sometimes it's triggered by a bug bite, sometimes by a flight or just at random.

I have a long haul flight coming up and it's making me super nervous (24hr+ travel time). Does anyone have any tips for reducing the chance of a flare up due to flights? My doctor has been quite unhelpful, other than suggesting prednisone if the pain is too much to handle (I've only done this once before and want to avoid taking steroids if possible).

I'm paying for extra leg room, but travelling business class to keep my leg elevated is unfortunately far too expensive.

My nephrologist said I’m likely the single most treated IGAN patient when it comes to the new therapies, and wondering if there’s anyone else with the same or a similar cocktail.

I have been on Voyxact and Filspari since January and February respectively. I started the fabhalta bridge program - which is 12 months - today.

I was diagnosed EGFR 38 with a MEST C Score of M1 E1 S1 T2 C1, did three months of cytoxan, and had a second biopsy of M0 E0 S1 T2 C0. Scar tissue = 80%

My protein went down to .5g but tacked back up to 1.5g. In that time I was supposed to start fabhalta but insurance denied and my neph wanted Voyxact more.

Voyxact and Filspari have brought my protein down to .296g. But the renal pathologist at SPARK gave me 5 years till I need a transplant and my neph said it’s not unreasonable, and that Iptacopan may be the most beneficial addition to further slow my progressive scarring. Something about inhibiting a certain receptor that’s being studied in a clinical setting but my kidneys wouldn’t survive without the other drugs.

I went to SPARK (IGA Nephropathy Foundation Patient Summit) and was surprised by how many US patients are on 1 or fewer of the new therapies.

The research really points to combination therapy: at least April/Baff inhibitor plus ERA, but the complement pathway could be the thing that ultimately knocks us out even with proteinuria beneath .3g.

And have done for many years, even when I was playing 2-3 times a week, my stamina has always been pretty damn bad, and seems worse than ever lately. Could this be IGA related?

Hi I was diagnosed with IgA Nephropathy in 2017 and i was on prednisone, ramipril, tacrolimus for a year that’s till 2018 and then i went on remission as my proteinuria came down to 0.2 from 4+. After all these years i was on remission and was absolutely fine and i was monitoring my proteinuria every year. Now in 2025 I had my twins delivered and after 3 day of delivery i had preeclampsia my bp shoot up to 180/100 and then my proteinuria started to increase and it was 3.And again i started prednisone since January and nothing worked then i had a biopsy in May 2026 and it came up nothing just IgA in inactive stage but nothing specific just some scarring . That too minimal scarring. Now my nephrologist gave me Dapaone, Nefromega, tacrolimus, ramipril but still my proteinuria is 3 after taking it for 2-3 months and now i stopped all medicine my proteinuria has come down like from 3.7 to 3.1 . I can’t be on immunosuppressants with small kids as they are more prone to infections i easily get sick as well

My labs are stable and i am not leaking protein yet. Only intermittent hematuria. So i came to this trip. But my dark urine episode has completed ruined my head, my excitement.

35M, 6ft/95kg, been on BP meds for a while (ARB + thiazide diuretic + beta-blocker + CCB combo). Recent labs:

\*\*•\*\*	eGFR: 81-88 (standard reported range, normal, stable across two tests months apart)    
\*\*•\*\*	BSA-adjusted eGFR: worked out to \\\~103 mL/min once corrected for my actual body size (I’m bigger than the “average” 1.73m² the formula assumes) — so likely even better than the standard number suggests    
\*\*•\*\*	Urine ACR: 10 (normal, under 30)    
\*\*•\*\*	Urine dipstick: trace protein positive — twice, months apart    
\*\*•\*\*	Uric acid: 7.06 → 8.5 mg/dL (trending up, above range)    
\*\*•\*\*	Triglycerides: 245 → 304 mg/dL (also trending up)    
\*\*•\*\*	HDL: dropped to 28 (low)    
\*\*•\*\*	BMI: \\\~28 (overweight)    
\*\*•\*\*	Kidney ultrasound/Doppler: completely normal

Doctor says kidneys look structurally fine and ACR is reassuring, but wants to keep an eye on the trace protein + uric acid combo since it showed up twice.

Anyone dealt with something similar — persistent trace proteinuria with otherwise normal ACR/eGFR while on BP meds? Did tightening BP control, diet changes, or a med switch (thiazide diuretics are known to raise uric acid) make a difference for you? Also curious if anyone’s doctor treated the uric acid directly even without gout symptoms, or if anyone else has looked into BSA-adjusted eGFR for a more individualized read.

Not looking for diagnosis, just curious about others’ experience before my next follow-u

I take a dipstick at home every once in a while to make sure everything is fine. Everything is fine except I noticed leukocytes was elevated. I don’t have any symptoms at the moment. Is that incidental? Or just part of having IGA. I don’t remember having that before. Not sure. Are these at home strips accurate? I ran it under tap water and turned the r same color so I’m not sure
Thanks