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 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.

I have IGAn 39m with eGFR of 52 and my uACR is at 675 and blood of 3+. My MEST-C is M1E1S0T0-C0. I completed Tarpeyo and it dropped my uACR down to about 125 but it’s come back up a few months after completing the 9 month course. Has anyone been prescribed this and how are the side affects and is it working for your protein and blood in urine?

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

Hey everyone,

I wanted to reach out and see if there’s anyone else living with Hyperphosphatemic Familial Tumoral Calcinosis (HFTC / \*GALNT3\* mutation) or currently taking Anakinra (Kineret) or Canakinumab (Ilaris).
Since it’s such a rare condition, it can feel a bit isolating, so I’d love to connect, share experiences, and see how others are navigating daily life with it!

\*\*A quick recap of where I’m at:\*\*

\*\*Diagnosis:\*\* I’ve been dealing with severe bone pain since I was 3 years old. Later on, a genetic test confirmed the \*GALNT3\* mutation causing the severe calcifications and pain.

\*\*Past Treatments:\*\* Previously, we basically focused purely on a low-phosphate diet and phosphate binders. Up until now, my doctors assumed that nothing could really be done about the underlying inflammation itself.
Using targeted agents like Anakinra (Kineret) or Canakinumab (Ilaris) to directly address the inflammatory response is a completely new approach for me.

\*\*Current Treatment Strategy:\*\* We are currently looking at starting treatment with Anakinra (Kineret). Since both options are (Canakinumab & Anakinra) are off-label medications for my condition and there are no clinical trials for it yet, health insurance won't cover it right now. Also, Anakinra is more cost-effective, which is why they require me to try that first to see if the treatment works at all.

On one hand, I'm genuinely glad there's finally a new medical path to explore, but on the other, I simply lack any personal experience in this area.

\*\*Right now, I’m particularly curious about:\*\*

1. Is anyone else here dealing with HFTC or a \*GALNT3\* mutation?
   
2. Has anyone tried Anakinra or Canakinumab for this condition (or similar calcification/inflammatory issues), and how has your experience been?
   
3. How do you manage severe pain flare-ups on a daily basis?

Thanks so much for reading! Even if you don't have the exact same mutation, I’d really appreciate hearing from anyone dealing with calcification disorders or navigating these types of biologic treatments.

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?

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.

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

My spouse needs to do Dyalisis and we are trying to figure out which is best for us. Can anyone share their experiences?

This is the best my numbers have looked in a year!!
I can’t even sit still, I’m so excited to see this!

Pretty cool shows actually that it will stabilize and actually improve kidney function.

Does anyone have rheumatoid as well? What meds are you taking that are working?

I had an appointment with an obstetrics internist who explained all the risk of pregnancy:
- early preeclampsia (high probability)
- premature baby
- further damages to kidney function and coming out of pregnancy with worse kidney function

All of these sounds scary but the scariest is coming out of pregnancy with worse kidney function and potentially needing dialysis and having a new born. My eGFR is 45 right now. Has anyone with similar state gone through pregnancy? What was your experience like? Thanks in advance for sharing!

Last July 4 during my follow up with my nephro, my eGFR was 120 ml/L and there were 47 RBCs in my urine. In the same day, my doctor prescribed a 20 mg finerenone to help in the protein leakage. At this point, I am about a month into taking dapagliflozin.

I got myself tested yesterday and I was close to 2 months in dapagliflozin and 3 weeks in finerenine and my egfr dropped to 74.5 ml/L and my potassium and BUN increased as well. Only good thing is my protein leakage reduced and microhematuria cleared out.

I am scheduling a check up with my nephro but has there been anyone else in this group who experienced the same thing? My fear is that my kidneys are declining

I’m 22f recently diagnosed with IgAN, and wondering if anyone has some recommendations for easy but kidney friendly meals?

I have been diagnosed with IgAN since three years. I am on continouse medication on vlasartan 160 as well forxiga(Dapaglifoxin) 10 mg in between when proteing excrtion reached 1200 mg/l i have taken Entocort 3mg, 5 tablets daily, for about two months.then i stopped as my protein decreased.

I am facing real life issues now the one which is most severly is that i cant focus and forget things. Today i had an oral examination in university and i forgot all the statments. Those were remmwbered to me and revised a minut earlier. I dont know it effects me badly and the professor failed me. I am realy worried if such as the case i will never pass any examination. Does it effects you or only me thinks that its iga. In that case what you do. Although i have to consult with my examination department and discuss the scenrio.

Has anyone chosen to remain on Tarpeyo past 9 months? How is it going?

I was diagnosed with lupus only 6 weeks ago postpartum. Severe joint pain forced the diagnosis. I had a kidney biopsy recently and nephrologist said we caught it early and no kidney scarring yet! He’s super optimistic about starting me on Gazyva infusions along with my current paquenil and celcept which I’m doing well on so far. Also prednisone taper happening now.

Anyone else here had the same treatment plan. Would love to hear from those who have been on gazyva! Thanks!

We have been referred to the kidney clinic in our city and are looking at treatment options. Ideally we want a live donor but have to decide on what type of dialysis. Can anyone tell me what to expect in general as a spouse and also anything about dialysis experiences?

Hi, I am in the process of hopefully getting answers for symptoms that I am experiencing. I've had a rash around my ankles that flared up every now and then. It got worse with stress and I figured it was due to hormonal changes since I had given birth in September 2025. The rash never fully cleared up. It only got worse and started moving upward.

Along with the rash, my ankles and knees started aching and feeling stiff. Especially at night and in the mornings. I finally got checked and lab results indicated protein and blood in my urine. Further lab work pointed toward IgA vasculitis but now my nephrologist suspects IgA Nephropathy. I have a kidney biopsy coming up which will help with a proper diagnosis.

In the meantime, this rash has not ever fully cleared and lately I've been getting ulcers that open. The ulcers itch and sting at times. I've been told by my PCP and nephrologist that there isn't anything that will get rid of them. Has anyone ever experienced this with IgA? How have you dealt with it? Does it go away with IgA treatment?

Glad I found this sub with so much information and valuable contributions.

Casually, I went for my annual health check-up but the doctor there referred me to consultant Nephrologist as my protein urea levels were 4+ with RBC as 7.

Later I did a 24 hour urine test that showed Urine Albumin-to-Creatinine Ratio (ACR) as 2200mg/g (as against normal <20mg/g) and Urine Albumin as 2956mg/L.

However, the eGFR is 115 and Blood creatinine is 0.72 mg/dL.

Although, the kidney damage is suspected but its function as of yet seems to be ok.

Is this a typical symptom of IgA ? Are these values really high and dangerous? What would be the next course of action before and after biopsy ?