r/IgANephropathy

Started about 2 years ago when my son got really sick 1-2 times he would get brown/red urine. We had initially put it down to UTI along with the GP. Antibiotics didn't seem to do much and when we saw the specialist last year he diagnosed it as IgAN.

He just has the typical symptoms of getting the brown/red urine when he gets sick with a disease that affects his his throat/mucus layers as I believe that is where most of the defective IgA1 is made.

Being so young I can only hope that his disease will either go into remission or have very slow progression. From the studies I've read there aren't any immediate feasible treatments at his age.

I would like to know if anyone from the community has grown up with IgAN and if there is anything I should be doing at his age. At the moment just seems like all I can do is pray and hope for the best.

Many thanks beforehand.

NOT PROMOTION. Looking for free users to test!

Hi CKD,

I was diagnosed with IgA nephropathy at 18 years of age, I am now 32. Thankfully I have been able to manage it since then, and I am still in stage 1.

Over the years, I have always been awful at diet. I am fit, in great health (apart from the fact), and I can say that is hasn't inhibited my life in much, other than a bit of worry when I go for my check up.

I am aware that diet can significantly slow down the progression of CKD, and I have been consuming healthy food that fits my condition for some years now. But it is such a hassle, we all know this.

With my knowledge in apps and software, I have built an app that knows my levels, limits and stage and basically tracks what I consume with intellegence.

The app has a few cool features that I built based off my needs/wants and experience.

SCAN/TRACK DIET
- It allows you to scan any barcode/food/shelf and it will tell you the Potassium, Phosphorus, Sodium and Protein inside.

As it has knowledge of your levels so it peronsalises your limits to your stage and bloodwork. Most generic diet apps don't actually help anyone with CKD. So this app was tailored and built specifiscly for thos with CKD. E.g, those in stage 5 have different diet limits to those in stage 1.

AI CHAT
- It has an Ai chat that has context of your bloods/stage etc so you can ask it anything related to food. E.g, I want a snack, what can I eat? The chat will tell you a variety of options you can consume with context of what you have consumed that day.

COMMUNITY TAB
- Just like this group, it has a community chat where users can ask questions, post any big wins, or post about any new food recipes they've found. Users can show love, comment or just like it!

RECIPES
- We update CKD friendly recipes daily, and depending on your stage, these will reflect that. E.g those in stage 1 will see different recipes to those in other stages.

I have been using the app for about 2 months now, and I am looking for others to test in exchange for some feedback.

Would love to hear your thoughts on this!

This was my first post, so thank you for reading to the end if you're still here!

Hi, i'm from Chile and i was doing a quick research to assess the possibility of traveling to the U.S to buy drugs that are not available in my country like filspari and tarpeyo. My jaw literally dropped when i read the prices and can't stop wondering how can you guys afford it, does your insurance cover it for you? I'm curious because i still can't believe how expensive they are and i'd really like to find a way to buy better medication that the ones we got here

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.

Hey everyone,

Has anyone ever had any issues with low potassium? Had a flare up a few days ago and they found that I had really low potassium values. I know typically ckd causes high potassium so was wondering if anyone had any experiences.

Sorry for the odd title but I just wanted to go to the point. I'm 25 and been diagnosed with IgANephropathy since a couple years and I noticed some kind of pattern and wanted to ask you guys if it were an occurrence to you too!

I first have to say that this ONLY happens once I'm very sick or more particularly, when I have FEVER. There were some times where I had nausea with a cold, but nothing really happened but last night, outta the blue, I think it was dehydration in the first place, my body felt like burning temperature. And guess what, the next day, what do I see? Brownish pee colour. Then it just made me realize that, all of these times I got really sick, like mononucleosis, pneumonia and the flu, I noticed that my urine was brown even red-ish sometimes!

I once told a nurse practitioner about it and he told me that there could be a correlation between the that I have iGA and that. I just wanted to know if it was just me or if it had happend or still happens to you as well!

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

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?

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

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).

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.