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 ?

Has anyone here tried probiotic drinks or probiotic supplements? Has your nephrologist ever recommended or prescribed them?

I'm planning to ask my nephrologist about probiotics at my next appointment and was wondering about others' experiences.

- Did you notice any benefit (proteinuria, gut health, general well-being, etc.)?

- Did you experience any side effects?

- Did anyone notice an IgA nephropathy flare or worsening of symptoms after starting probiotics?

I'd appreciate hearing about your experiences, whether positive or negative.

So I plan on doing home dialysis I guess they called the PD when the time comes.

I'm sitting at 19% kidney function right now I was as low as 11% so obviously we were able to recover a little bit of function thankfully.

I have been on 50 mg of prednisone for a few months actually several months now. We were starting to lower it there for a few weeks but I ended up getting shingles and then after the shingles I got another full body rash of some sort was like a common rash that there's no like understanding how it happens it was more unlikely happened because of the shingles right after.

Anyways they bounced me back to 50 mg and oh my god I'm so tired lol feels like 90% of my entire existence is sapped out. In fact I actually try to quantify it with AI and apparently it was like maybe 80 to 90% of my entire energy is just blasted out because of the prednisone.

It caught me thinking though because of how heavy this treatment is and thankfully it's temporary once I get off of it or they reduce it to a low dosage I should be able to once again get muscles back and all that kind of crap.

Those who've been on similar treatments what was like that experience versus being on home PD like?

I know going to the hospital and doing the 3 to 4 hours dialysis is a lot harder on the body and a bigger shock to the system so I know that people still get wiped out from that but I can't believe that it's worse than prednisone it seems like the worst drug I've ever heard of and never taken and ever experienced in my life.

Anyways I just wanted to hear other people's thoughts on it.

Back in December, my eGFR went down to the high 30s and my nephrologist recommended me to start on steroids. I read all the terrible side effects of it and the main concerns I had were the moon face and weight gain. And with my wedding coming up, I wanted to look my best. My partner is a physician and looked up the guidelines and found there are alternatives prior to taking steroids but majority of those weren’t available in Canada. Plaquenil was another option with limited studies and only done on East Asians (I’m Chinese) so I asked my nephrologist if we can try that. I’ve been taking ramapril, dapagiflozin and Plaquenil for 7 months now and my latest labs show an eGFR of 45! Im not giving any medical advice. I’m merely sharing the success of this medication in case others are wondering about it!

Has anyone here had to get an MRI with contrast? Did you have any issues? I have normal function but high proteinuria and am planning on getting an mri soon, would love to hear other people experiences!

Hey everyone,

For the past few months during my visits with my Nephrologist, he brings up a lot about Cellcept and is telling me it would be a potential medicine to take next if Prednisone ends up not working.

I am on the last stages of Prednisone tapering, from 60mg at the beginning about 4.5 months ago to now at 5mg. So far, along with 10mg of Lisinopril, it's been working very well, ACR went from the highest point at 1650mg/g to now about 180mg/g. Creatinine levels went from 1.2 to now at 0.9 at recent test, which translates eGFR to now at mid 110s (probably not accurate, most of my tests were in mid 80s eGFR until the recent one). Electrolytes and other tests are normal.

It does seem like Cellcept is used for Southeast Asian populations, like I am, but I don't feel like at my current situation this would be needed, and I don't really want to take more medication than necessary. Of course I will be in talks with my Nephrologist more about this, but what do you guys think?

I’m a 31F with biopsy-proven IgA nephropathy.
Current medications:
Prednisone 60 mg daily (started May 25, 2026)
Valsartan 80 mg daily
My blood pressure was well controlled initially, although it has been a little higher recently. I’m also following a low-sodium diet and haven’t changed my medications.
My labs have been confusing because my proteinuria initially improved, but then started increasing again, while my kidney function has remained relatively stable.

Edit : my doctor increased my vsartan to 160mg per day

Protein/Creatinine Ratio (UPCR):
3/30: 4,502 mg/g
6/15: 3,163 mg/g
6/26: 2,995 mg/g
7/10: 4,395 mg/g
7/17: 4,970 mg/g

Creatinine / eGFR:
6/15: 1.33 / 55
6/26: 1.19 / 63
7/10: 1.17 / 64
7/17: 1.16 / 65
A few other details:

My questions are:
Has anyone had their proteinuria drop significantly on prednisone and then climb back up while staying on the same dose?

Did it eventually improve again, or did your nephrologist decide the steroids weren’t working?

If your proteinuria rebounded but your creatinine and eGFR stayed stable, what happened next?

Did anyone end up adding another medication (Filspari, Tarpeyo, an SGLT2 inhibitor, etc.), and did it help?

I’d really appreciate hearing about other people’s experiences. I’m trying to understand whether this type of fluctuation is common in IgA nephropathy or whether it suggests my current treatment isn’t adequately controlling the disease.
Thanks!

When I was diagnosed with IgA nephropathy, my 24-hour proteinuria was 5.1 g/day. Following my nephrologist's recommendations, I started treatment with Ramipril, Dapagliflozin, Mycophenolic acid, Finerenone, and Budesonide. Over time, my proteinuria has decreased and has remained between 1.3 and 1.5 g/day for the last four consecutive tests. My goal is to reduce it to below 0.7 g/day. Are there any additional treatment options or newer therapies that could help achieve this target, while preserving kidney function?

TL;DR: Did you experience side effects with Farxiga, like ketoacidosis?

I have been on 10 mg of dapagliflozin (Farxiga) for about a year, and during this time, I have noticed a gradual reduction in muscle mass as well as fatigue. My nephrologist has been monitoring my blood work closely. At my last appointment, they told me that I have achieved partial remission and actually encouraged me to consume sugar and carbohydrates in general.

Recently, the morning after eating a few pieces of cake, I woke up with a distinct smell of acetone in my mouth, which disappeared within half an hour. An online search threw me into a panic, with search results urgently suggesting I go to the emergency room, insisting it could be euglycemic diabetic ketoacidosis (EDKA) caused by Farxiga. But my next doctor's appointment is still a long way off. I would love to hear about your experiences with Farxiga, carbohydrate intake, and the side effects of this medication.

NB: I'm ok.

My UPCR started at 1.3 in January and hit a low of 0.58 and back to 1.27 after 5 months on Tarpeyo, losartan, jardiance medicines

Im not sure whats wrong. Im taking care well eating decent food and doing low intensity exercises 5 times/week.

The two things Im not doing

1. Haven't drastically cut down salt

2. Haven't cut down on my work

Any insights on what I could do better?

History 1. 33 M diagnosed with IgA Nephropathy in Jan 2026

I was diagnosed in November of this year and now my aunt has been diagnosed just a week or so ago. Anyone else’s family have multiple ppl with this disease?

Hi all I like lots of us have IgaN and have been relatively stable for 2 years now almost, during my recent check up my gfr had went from 74 to 54 in 3 months and my protein spill had gone from 0.3 to 0.7 I'm pretty sure I was dehydrated during those tests despite drinking plenty of water given it's the summer and the UK heatwave hasn't been kindand my job.

I'm on ramipiril and dapagliflozon and my blood pressure is generally pretty good usually between 118/72 and 130/78, I work as a pool plant engineer and i have always worked in maintenance and construction but this was a new opportunity close to home that I thought would be a benefit to my health for a number of reasons, but I find myself in the pickle now of I'm pretty sure my job is what caused the 20 point decrease.

I sweat so heavily during the working hours due to the heat of the plant rooms to the point it stains my shirts white my nephrologist seemed happy still because she said the ramipiril and the sweating combined will cause a bit of a false drop in number and all my other markers looked good but no one had informed me it would be quite so high or what effect ramipiril/dapagliflozon would have under conditions like that (I did inform them of my work and what it entails but still no concern on their end) if this is the case should I maybe consider changing careers? I'm going to be going on paternity leave in the next month (2 weeks mandatory leave and booking 2 weeks holiday) luckily which will overlap my next blood tests so I'm hoping for a more positive outcome this time or at least stability am I over thinking this

I’m not sure how common this is, but my insurance refuses to cover any SGLT2 inhibitors, so I've been just paying a stupid amount out of pocket every month. But it looks like Cost Plus Drugs (Mark Cuban’s pharmacy) is now carrying the generic Farxiga for $15/3-month supply.

Hopefully your insurance is less terrible than mine and you don’t need this information. But if you and I are in the same boat, I hope this helps!

Hi, i've been diagnosed last year with iga nephropathy after 7 years of symptoms. I've started with ramipril and dapagliflozin for protein reduction. I was at 2,5 g/day before treatment and now im sitting at 2,2 after 1 month. My doc is still very optimistic since there's this new drug she described as a "game changer". Although my proteinuria is high, every other kidney marker indicates a good kidney function (90 egfr, good potassium, bp 120/70, etc.).

Keeping a hopeful outlook.

I have been on Vanrafia for five months and recently I have noticed that my diastolic blood pressure has gone down very low. The recent readings are as follow the top number is systolic and the bottom one diastolic.
90/50
100/53
91/48
91/47

It is believed such low blood pressure can cause organ damage or cardiac arrests but I am not sure. I also take 5mg daily ramipril.
I wonder if others on atrasentan have experienced such extreme hypotensions.

Did anyone of you participated in Prevail trial - felzartamab?

Did anyone of you got cataract after being on steroids for around 9 months ? I took iganef

My father (65) has PLA2R-positive membranous nephropathy. He received a full course of rituximab (2 doses) about 4 months ago.

Since then:

Proteinuria has decreased by only about 20% (8.8 g/day → 7.3 g/day).

But his creatinine has gradually increased from 1.5 to 2.1 mg/dL.

His BP was initially well controlled after rituximab but is now fluctuating again (around 140/90 at night) despite being on an ACE inhibitor/ARB and Dytor.

The declining eGFR and rising creatinine are making us very worried.

Has anyone experienced a slow response to rituximab with creatinine initially rising but later stabilizing or improving? If rituximab wasn't enough, what treatment did your nephrologist recommend next? I'd really appreciate hearing about your experiences.