r/IgANephropathy

Looking for recipes (also Type 2 Diabetic) and support. I am a 34 male recently diagnosed with IgAN. On September 9th, 2024 my EGFR was 61. On February 10th, 2026 it was at 23, May 27th it was at 13, and on June 17th it was at 9 which was my most recent labs. I feel like this has come out of nowhere and I have been trying to do as much research as possible but any support would be great.

This was from my biopsy, I am not sure how to understand this. IgA NEPHROPATHY, MESANGIOPROLIFERATIVE AND CRESCENTIC TYPE, OXFORD CLASS: M1 E0 S1 T2 C1

Thank you all!

Hello IGaN warriors! My son has been battling this for two years and we are heading to Florida for our first “big” vacation since his diagnosis at 9. He started out rough and was at one point on 17 medications in the morning, and now he is thriving and considered stable. He plays 4 sports and is very active, even though he is in stage 2.
He is currently on Filspari and Farxiga, and is no longer immunocompromised due to him coming completely off of those a bit after his 10th birthday. We generally are good about eating meals at home (my wife has celiac disease) or cooking when we travel. We are possibly going yo go out to eat twice in this trip and let him live a little. He has blood pressures around 100/60, and he is great at water intake. Just want to hear from those who actually live with this and not chat gpt and those who don’t have a clue. I just want him to have a “normal” childhood, which for the part he is having now.

Using my throwaway, just looking for any insight as this diagnosis feels like I’m getting thrown into the deep end of the pool.

In January I was diagnosed with vasculitis and consistently have had protein/RBC in my urinalysis. Nephro recommended biopsy but thought the wouldn’t find anything due to my levels being pretty stable. Glad I got the biopsy!

- IgA nephropathy, Oxford classification M0, E0, S1, T0, C0
- Minimal interstitial fibrosis
- Mild arterial sclerosis

Was told I have about 5% scarring but my proteins look good, he wants to start me on a medication (forget the name, something new).

I lurked around this reddit for a few days and I’m just looking for people who have been through the same thing as me… really struggling to grapple with this diagnosis, it’s already a lot with the vasculitis diagnosis.

Hi everyone! I have posted on here a few times now — I’ve been on Tarpeyo and Filspari for about 4 months and not much improvement at all in labwork. Had a flare about a month ago and unfortunately my proteinuria (1.8->2.2->now 3.5) and eGFR (118 before Filspari->99->now 78) worsened and have not seen much bounce back after 3 weeks.

Will probably doing a repeat biopsy soon to determine next steps. Doctor is suggesting either switching to CellCept + methylprednisolone if it’s just active/stubborn inflammation, or IV cyclophosphamide if it’s become crescentic. Wondering if anyone has experience on CellCept and how long they were on it — thanks.

Have also asked about Voyxact but am not sure if it would be strong enough.

Hi everyone, I am trying to understand my kidney disease. I would also like to hear from you - what specific lab test helped you to identify the exact kidney didease you have and treat it.

What do you do when uric acid effects knee pain and other joint pains, how to deal with this

What do you take for it? I have weaned off Tarpeyo and am experiencing what I recall from before Tarpeyo round as a feeling of inflammation all over. I understand Tarpeyo helps everything feel better due to its nature. I take Tylenol for pain but just curious what you all are taking.

Hello,

I’m a 27-year-old male. A few days ago, I had a kidney biopsy to help determine what kidney disease I have. My nephrologist told me that the most likely diagnosis will be autoimmune glomerulonephritis.

During my stay in the hospital, I spoke with several other patients. They all told me that, at the beginning of their illness, they had to return to the hospital regularly to receive intravenous medication before continuing with other treatments.

I’m currently waiting for my biopsy results and the final diagnosis. In the meantime, I wanted to ask: is it common for people with conditions like autoimmune glomerulonephritis to be admitted to the hospital again after diagnosis and stay there for treatments or procedures?

Those few days in the hospital were the worst days of my life, and I honestly never want to go back on the hospital bed ever again

I tried on the internet but only unclear answers . Around 1 and half years before diagnosis, I had episodes of chronic stress, caused by some family issue, I was passively suicidal. I often think and correlate, this might have caused this issue .

Do any of you also have a similar experience.

my Insurance and exteral review rejected my Voyxact. I got the second dose of Voyxact last week. i Don’t no what to do? Any body have any suggestions and opinions.

I’m IgaN diagnosed with an EGFR of 48 and a BMI of 27. After first okaying it with my nephrologist, I got a private prescription for wegovy / ozempic. Starting out today @ 0.25 and hoping to lose around 12kg in the next few months. Does anyone have experience with wegovy/ozempic? Did it affect your efgr or blood pressure?

Is it true that kidney function lowers due to a kidney biopsy?

I am very confused about these beverages -

- milk coffee
- black coffee
- tea
- beer
- lemonade

I regularly face challenges choosing any as these are present almost all the time in any social gathering.

Hi all,

I recently experienced a flare this weekend due to a stomach bug. My lab numbers are the worst they've ever been, and my nephrologist is pushing for a repeat biopsy as soon as possible to determine whether the disease has become more active and potentially crescentic.

For context:

• I was diagnosed in October 2025, M0E0S0T0C0 by biopsy. My uACR then hovered between 100-200 mg/g and eGFR around 125 which was acceptable to monitor without medication.
• In February 2026, I got sick with a cold and my proteinuria jumped to 800 mg/g. Didn't see improvement after the cold went away, so my doctor started me on Tarpeyo and Filspari in early April. eGFR still holding fine at 118.
• Just prior to my recent weekend illness, my uACR was tested to be 1252 mg/g and eGFR 99 -- an indicator that the medications weren't quite working yet.
• Now, as my recent symptomatic sickness is starting to clear, my uACR is highest it's ever been at 2094 mg/g. Moreover, my eGFR is at 83 on Saturday and then 70 on Wednesday -- the lowest it's ever been.

The nephrologist is concerned that I have active disease going on and is worried about scarring in the form of crescents. I guess I always thought crescentic disease was something they'd catch in the original biopsy as the "type" of IgAN I had. Is it a possibility that my disease has evolved in that direction and is now rapidly progressing? Or have you all experienced something similar after a flare with bad labwork that improves later on? I was really relieved about my MESTC score back in October but it seems like a quick turnaround to have another biopsy in less than a year.

He is also suggesting IV cyclophosphamide and oral glucocorticoids (probably prednisone) which seems intense to me.

If anyone has advice on a similar situation or treatment plan, I would love to hear it. Definitely a little scared :(

Has anyone been put on GLP-1s to reduce proteinuria? Doing my own research on what meds reduce it, GLP-1s were one of the top results.

My recent test results (ACR) is 26.7 (currently on 5g enalapril and 5g farxiga)

Wondering how common it is and if it’s worth mentioning to my nephrologist.

Can someone explain why my blood sugar drops with igan although I am not diabetic? I’m struggling with energy levels. I’ll eat and then get so sleepy I end up napping. Even eating healthier meals and 1 small itty bitty toddler size ice cream puts me to sleep.

I feel like it’s gotten worse since I’ve gotten diagnosed in April and started medication. Currently on jardiance 10 mg and Filspari 200 mg (finally tolerating).

I am overweight though 165 lbs since I have been consistently taking Filspari. Last week I was 160 lbs. I am holding more bloat in my stomach.

Maybe I’m fat an that’s what is causing my blood sugar to drop. I am not prediabetic either. I don’t know if I bring it up to neph or pcp or both. I see them soon though so that’s a positive.

After being on atrasentan (vanrafia) for four months my poassium level has gone up to 5.8 mmol/L. I have also been taking ramipril for the past two years but it never affected my potassium level therefore I believe the culprit must be atrasentan. Has anyone else experienced an increase of their potassium level after taking Atrasentan?