Hi! My kidney biopsy is tomorrow, i'm so nervous and scared, but it also means that i'm finally getting answers. For the ones that have undergone this procedure, was it painful? Were you scared? I'm lowkey panicking.
Hey everyone,
I’m 32 years old and was officially diagnosed yesterday with mild early-stage IgA nephropathy after a kidney biopsy.
Everything started on November 11, 2025, after a throat infection/virus. Not long after, I noticed blood in my urine for the first time and had been dealing with fatigue for months. Seeing blood in the toilet honestly scared me, so I went to the ER. After urine tests and more follow-up, I was referred to a nephrologist.
I had my kidney biopsy in March 2026, and yesterday I finally got the results: benign/early IgA nephropathy. My next follow-up is in 3 months with blood work, urine tests, and blood pressure monitoring.
To be honest, I’m still trying to process all of this. I’m not the kind of person who feels sorry for himself, but this hit me pretty hard. Right now I’m mostly trying to learn, understand what life looks like with this condition, and connect with people who actually know what this feels like.
If anyone has advice, personal experiences, or things you wish you knew early on, I’d really appreciate hearing from you.
A couple days ago i posted i was worried about getting my biopsy. Well, it didn't go very well, i'm still at the hospital in intensive care because i had and hemorrhage. Good news is the blood is not coming from my kidney, and the preliminary report of the biopsy confirms IgAN, i still have to wait for the final analysis to know my prognosis. Even though that was the most likely result, i'm so emotional right now knowing it for sure. I also was going on vacation with my mom at the end of may and i've been told by my neph that won't be possible. I don't know, i'm so sad thinking about the future, now my dad's been taking amazing care of me and i think about if i ever need a transplant he won't be alive anymore and i'll be alone, i think about my friends having fun at the bar right now to go to the club later and i won't be able to enjoy those things with them anymore. I'm just so sad but i'm also glad i've found this community that has been so supportive since everything began in 2024. Anyway, thank you all, i'll be trying to find out how to cope with this
Curious if anyone has any experience with using chlorthalidone to treat proteinuria? My doctor took me off Farxiga today as it had no impact on the protein spillage after an 8 month trial. In fact my eGFR fell from 88 to 69 during this period. My ACR didn't move and urine protein increased, so she changed my meds to Chlorthalidone and cancelled me taking Hydrochlorothiazide. In addition to this, I am also on Ramipril and Amlodipine for hypertension.
I had high hopes for Farxiga but it looks like it isn't helping me. Just curious if anyone has had positive results on chlorthalidone?
my upcr 93 mg. and my acr 16 mg after 9 month Tarpeyo . what is my next med for iga
Cadaver Kidneys with IgA deposits have been transplanted into recipients without IgA nephropathy. In all cases, the IgA deposits rapidly disappeared supporting the concept that abnormalities in IgAN lie in the IgA immune system and not in the kidney.
Our immune system thought it was helping but f***** it up. Kinda crazy.
My shoulder is hurting me. I’m having a rotator cuff injury. I been taking some Tylenol as I know Advil is not good for the kidneys. You think short term use of Advil will be bad ?
Any suggestions
Thanks
Hey everyone. I just decided to write this post because I've been passing through a major change recently and I have a feeling my health isn't in the best shape. And since I was diagnosed some years ago with IGA Nephropathy maybe together you can share your impressions over my case and give opinions. Just to make it clear before anything else: I do plan to start seeing a nephrologist asap to dive into my situation.
Brief historical first: I was diagnosed with IGA in 2021 - I was 34. By then I was living in Los Angeles. But I've been having high traces of protein in my urine since my adolescence, back in Rio (Brazil). But before, I don't have any idea TBH, I think my parents never really understood how serious the issue was (though my father had, I think, some background of stone in his kidneys). Anyway, so it took me years until this doctor, in LA, told me: "Dude you have to do a Biopsy because this is weird and we don't know how compromised you Kidney already is". So I did it.
Just to make it clear - before the diagnostic I was having constant hangovers, headaches out of nowhere, swollen feet and ankles, high blood pressure, fatigue. All the classic symptoms.
After the diagnostic I took the first blow (knowing that it had no cure) and that I had to start a treatment right away. Basically Prednisone and something to control my blood pressure (Losartan, if I remember). The thing is, on 2023 I came back to Rio and, immediately knew I had to keep this on track, so I went to a General Physician/Cardiologist - first to a regular check up - but together we agreed to monitor my situation and, since then, I haven't been back in a Nephrologist. With this specific doctor I stayed on Prednisone (5mg), plus Forxiga (not sure if this name is correct internationally) and Benicar-Anlo (blood pressure). Also Rosuvastatin to fight bad Cholesterol. According to all the tests I've done with him I had an improvement on my Kidney functions and my overall health was well.
Now I'm 38 years old. My wife is German and we decided to live in Germany. So, on top of all the adaptation challenges (such as learning a totally new language, find a job, etc etc) I also have to pay attention to my condition in a different country and I haven't been feeling well. Last week I've been in a doctor in Berlin (she spoke English) and basically my GFR is 51.3, my cholesterol is above the standards, as so uric acid, creatinine and thrombocyte - everything above the normal levels. Immediately I cut of most of red meat, creatine supplements, less dairy foods and I've been doing my best to drink more water, take walks in the forest nearby my place and eat healthier. Also, I'm around 5'8"/1,73cm and I'm currently around 80kgs - clearly heavier than I've ever been - but I don't feel fat though, more bulky, bloated sometimes. No drinking, no smoke. I feel back pain sometimes also.
Anyway, I'm worried because I do understand that I need to follow this up with a Nephrology, it's pretty obvious. But, as a 38 yo man, active, trying my bast to take care of myself, I still feel that the burden is heavy and it's charging it's price somedays. Sometimes I feel great, sometimes I feel very tired and weird. I really apologize for the big text guys, but please, I just want a feed back on my situation, the medication I've been taking and your personal experience. I'm absolutely free to a closer conversation on this to share impressions, new treatments. Also feel free to tell me any suggestions on drugs or ways to make me feel better. Maybe I should go 100% vegetarian, avoid any protein, I don't know... thanks again. Freut mich! 💖
So, I finally have my nephrologist consultation tomorrow after 9 years of permanent blood +++ and protein +++. My eGFR is 96. Urine is typically coffee coloured when poorly. Crazy kidney flare ups once every couple of years at least.
Had all the usual test, CT scan etc.
What to expect? Will I finally be taken seriously. Thanks.
***UPDATE***
For anybody curious. Saw my nephrologist this evening, he’s 75% certain I have IgAN waiting on some blood results and an ultrasound before a biopsy to confirm. This will all take place over the next few weeks.
Hi everyone! Igan patient here had it for about three years so far. I get flare ups of gross hematuria - currently having a minor stuffy nose rn and am seeing the blood in urine.
I pretty consistently get the visible cola colored urine whenever I get an URI and was wondering how often you guys get those? And how long do they usually last?
I usually just wait it out and make sure to drink water which my neph recommended but was wondering. How do you guys deal with them?
I’m 26 now diagnosed in 2024, currently on dialysis my dad is pre dibitec, his also had dibities which led to kidney failure, and both of his parents also had dibities…i don’t any further than that….i asked chatgpt about it and it said it’s not linked, that it is a genetic fault basically born with bad luck.
Could u all pls let me know about this, thank you.
Recently had my first nephrologist appointment and he has basically told me he believes I have IgAN. He has ordered an ultrasound and blood tests. He took 7 vials of blood, and I didn’t ask what for. Does anybody know what he may be ruling out before I’m offered a biopsy. I had a CT scan 4 weeks ago because of flank pain. Thanks.
Hello,
There is a high possibility I will be getting a kidney transplant in the near future due to my mom being a living donor. Has anyone had experience with a transplant recovery? I’m also nervous about the large scar and how it will affect my other chronic illnesses (rheumatoid arthritis and Hashimoto’s).
Male 25.
I am 19 months in since my symptoms first started (cola urine after a gym session] and 3 months in since my diagnosis of igan HAAS class 1.
Current labs -
My current gfr - 120
no proteinuria
RBC are present
Usually my urine is clear.
Sometimes dark yellowish with clumped tiny speck of red blood (like a tiny red dot that is not solid when picked on a tissue but smearable) [cystoscopy, cytology done and infections already ruled out with 16 months of repeated different tests before the eventual biopsy]
And when i get fever I can see cola urine.
Has anybody experienced something similar? Does the hematuria ever subside? How is your prognosis?
Here is my ongoing treatment:
Iganef — budesonide controlled release
, 9 mg twice daily
Empanef — empagliflozin
Initially 10 mg once daily
Telma 40 — telmisartan 40 mg once daily
I am 29 years old and was diagnosed with IgA nephropathy two months ago. My doctor recommended a kidney biopsy, but because my kidney is in a difficult position, they decided against it and just advised me to take medication and monitor my condition. Currently, I am only taking Aprovel 150mg for high blood pressure, and my eGFR is 89. I would like to ask what methods can help preserve my kidney for longer. I am very upset and don't want to undergo dialysis.