IgA Nephropathy: A Practical Patient Guide

If you are still getting your bearings, start with What is IgA nephropathy? or read my story if you want to learn more about my personal experience with the disease.

Nobody knows the root cause of IgA nephropathy. Evidence suggests that it comes from a mix of genes, the immune system, and triggers such as infections of the nose, throat, or gut.

IgA nephropathy is often explained with a simple model called the "4-hit" hypothesis. It is not a test you can order. It is just a useful way to understand what your doctors are trying to treat.

1. Your immune system makes an unusual form of an antibody called IgA (galactose-deficient IgA1, often called Gd-IgA1).
2. Your body forms autoantibodies against that unusual IgA.
3. Those stick together into immune complexes circulating in the blood.
4. The complexes get trapped in the kidney filters, driving inflammation and scarring over time.

This matters because different therapies aim at different steps. Some are kidney-protection drugs that reduce pressure and stress on the filters. Others are immune-targeting treatments that try to reduce the upstream process. Some target complement, which can amplify inflammation.

If you want the one-page visual: KDIGO IgAN infographics poster (PDF)

IgA nephropathy can be steady, it can flare, or it can do both. Some people have episodes triggered by infections (for example dark or bloody urine), then return to baseline. Others never see blood but have persistent protein in the urine. Because the presentation varies, your plan should be based on your own trend over time, not someone else's story.

IgA nephropathy can cause chronic kidney disease (CKD), meaning long-term loss of kidney function. CKD is described in stages (1 to 5) mainly based on eGFR. Your stage helps your nephrologist choose meds and monitoring frequency, but it is not the whole story. Protein in the urine plus the eGFR trend usually matter more than any single stage label.

A note on labels: your eGFR can move up or down from one test to the next, so it is possible to cross between stages over time. Your care team usually pays more attention to the long-term trend than any single stage.

• Stage 1: eGFR 90+ (with evidence of kidney disease, like protein or blood in urine)
• Stage 2: eGFR 60 to 89
• Stage 3a: eGFR 45 to 59
• Stage 3b: eGFR 30 to 44
• Stage 4: eGFR 15 to 29
• Stage 5: eGFR under 15

Once you have the basics, the next step is a clear 3 to 6 month plan with your nephrologist.

It's important to work with your nephrologist to figure out where you are, where you're headed, and what can be done about it. This can help tremendously with anxiety about your new diagnosis, lab results, and a treatment plan.

Ask:

• Is this primary IgA nephropathy, or could another condition be driving the IgA deposits?
• Do the biopsy findings match my overall picture (symptoms, labs, and how fast things have changed), or is anything atypical?
• What is my Oxford score (MEST-C) and what does it suggest about risk?

Request a copy of the kidney biopsy pathology report for your records.

The International IgAN Prediction Tools are a valuable way to quantify short-term risk of progression (up to 7 years from kidney biopsy) and support shared decision-making with your nephrologist.

• International IgAN Prediction Tool at biopsy (for adults)
• International IgAN Prediction Tool post-biopsy (for adults)

You are not trying to "win" any single lab result. You are trying to understand the trend.

Ask:

• Which urine test are we using to track protein: UPCR or UACR?
• How often will we re-check it while we are adjusting meds?
• Are we also tracking eGFR using creatinine only, or creatinine plus cystatin C?

Common "baseline" items your team may track early on:

• UPCR or UACR (protein in the urine)
• Creatinine, eGFR (kidney function trend)
• Electrolytes (especially potassium and bicarbonate)
• Blood pressure (home readings are often the most useful)
• Urinalysis with microscopy when symptoms change

A note on timing: rising or persistent protein in the urine is one of the main signals your nephrologist uses to judge risk and decide when to step up treatment. KDIGO guidance explicitly uses proteinuria (protein leakage) thresholds and time on optimized supportive care to define higher-risk disease and guide escalation.

If you want to read it yourself:

• KDIGO 2025 IgAN/IgAV Guideline Executive Summary (PDF): https://kdigo.org/wp-content/uploads/2025/09/KDIGO-2025-IgAN-IgAV-Guideline-Executive-Summary.pdf

This is the question that prevents months of drift.

Ask your nephrologist to fill in the blanks:

• "If my proteinuria stays above _____ after _____ weeks/months of optimized supportive care, we will consider _____."
• "If my eGFR drops by _____ or the slope worsens, we will do _____."

That is it. You do not need to memorize guidelines. You need a shared trigger for the next decision.

Many people with IgA nephropathy notice dark or bloody urine during or right after an upper respiratory infection. Sometimes it is just a flare that fades as the infection fades. Sometimes it is something else. The main point is to triage it appropriately.

• You cannot urinate, or you are passing clots
• Severe flank pain (stone-level pain)
• Fever and urinary burning (possible infection)
• New or quickly worsening swelling, shortness of breath, or rapid weight gain
• You feel severely dehydrated or faint

If you already have reduced kidney function (low eGFR, high creatinine, or you have been told you are in later-stage CKD), treat this as more time-sensitive. Call your nephrologist the same day if you can, not "next week."

Call your nephrologist and say:

• "I have IgA nephropathy and I have dark or bloody urine after a respiratory infection. What tests do you want, and when should I escalate?"

Then ask:

• How long should I watch this before I call again if it is not improving?
• Are there any meds I should pause temporarily while I am sick (this is individualized, so ask)?

This is the part of IgA nephropathy care that is widely available and used internationally. It also overlaps heavily with standard CKD care: the goal is to slow loss of kidney function over time and reduce risk from high blood pressure and cardiovascular disease.

Even if you later add an IgAN-specific therapy, this foundation often stays.

You will hear this called ACEi/ARB or "RAAS blockade."

Why your nephrologist likes it:

• Often reduces proteinuria
• Lowers pressure in the kidney filters

Questions to ask:

• What blood pressure target are we aiming for?
• If my creatinine rises a bit after starting, what is an expected bump vs. a problem?
• What potassium level becomes a concern for you?

These are used for kidney protection in many chronic kidney diseases, including IgAN, even in many non-diabetics.

Questions to ask:

• Do you recommend an SGLT2 inhibitor for me at my current eGFR?
• What side effects should make me call you?
• When I get sick or dehydrated, do you want me to hold it temporarily?

You cannot directly control your lab results, but you can reduce the things that push them in the wrong direction.

Questions to ask:

• What sodium range do you want me in, realistically?
• Should I be measuring blood pressure at home, and if so, how often?
• If my home readings differ from the clinic, which should we trust?

This varies by person. The point is not that you need all of this, but that these are reasonable topics to raise.

• If bicarbonate is low: "Should we treat metabolic acidosis?"
• If cholesterol is high: "Do I need a statin?"
• If swelling is present: "Do I need a diuretic, and how do we monitor volume status?"

"Steroids" can mean very different things in IgAN.

These can reduce inflammation but have real tradeoffs. Some nephrologists use them selectively in higher-risk cases.

Questions to ask:

• What is the specific benefit we are hoping for in my case?
• What is the duration, taper plan, and monitoring plan?
• What is my infection risk, and how do we lower it?

This is a steroid designed for gut-targeted release (not the same as prednisone in how it is delivered).

Questions to ask:

• Is targeted-release budesonide appropriate for my risk profile?
• What side effects should I watch for?
• How will we judge if it is working (proteinuria change, eGFR slope, both)?

You do not need to know every pathway to have a good discussion. A useful way to structure it is:

• "Is my disease more proteinuria-driven right now, or are we seeing a clear eGFR decline?"
• "Are we trying to reduce proteinuria quickly, change the long-term slope, or both?"
• "How do we sequence therapies if the first choice does not get us where we want?"

If you want the site's running list: Treatments overview

If you are outside the US, the right question is not "Should I take this?" but:

• "Is this available here, or is there an equivalent, or a trial?"

A single medication that combines two targets often used in kidney protection (endothelin and angiotensin).

Questions to ask:

• If I start sparsentan, do I stop my ACE inhibitor or ARB?
• What monitoring do you use for blood pressure, potassium, liver labs, and pregnancy risk?

A selective endothelin A receptor antagonist.

Questions to ask:

• What side effects are most common in your experience (fluid retention, edema, blood pressure)?
• How do you monitor for volume issues?

An oral complement pathway inhibitor (alternative pathway).

Questions to ask:

• What infection risks should I know about, and what vaccines do you recommend?
• How will we track benefit (proteinuria reduction, eGFR slope, both)?

See the earlier section on targeted-release budesonide. The key is confirming whether the expected benefit aligns with your current risk category and goals.

An APRIL-targeting antibody (B-cell and IgA pathway related).

Questions to ask:

• What does dosing and administration look like (clinic vs. home)?
• What are the main risks you watch for?
• What is your plan for follow-up and deciding whether it is helping?

If you want to show up prepared without becoming a part-time nephrologist, bring:

• Your last few UPCR/UACR results (or ask the clinic to print the trend)
• Your creatinine/eGFR trend (same idea)
• A simple home blood pressure log if your clinician wants it
• A short list of current meds and doses
• Two questions you want answered today (write them down)

These topics show up constantly in patient communities. They are worth asking about, but the right answer is usually personal to your CKD stage, proteinuria level, blood pressure, and medications.

People ask about diet, especially plant-based eating, sodium targets, and how much protein is safe.

Questions to ask your nephrologist (or renal dietitian):

• What sodium target do you want me to aim for, and how strict should I be?
• What protein target do you want for me right now (grams per day or g/kg/day), and why?
• Do I need to worry about potassium or phosphorus yet, or not at my current stage?
• Can you refer me to a renal dietitian so I do not lose weight or under-eat while trying to "eat kidney friendly"?

Many people ask for reassurance that they can keep training, and seek clarity on supplements.

Questions to ask:

• Are there any exercise restrictions for me, or is normal resistance training and cardio fine?
• If I use creatine, do you want me off it before labs so we can interpret creatinine and eGFR more cleanly?
• What is my daily protein target, and does that rule out protein powders for me?

Vaccines and infections can both be followed by symptoms that feel like a flare. This can be scary.

A practical way to handle this with your care team:

• Ask your nephrologist if you should get vaccinated, and if so, which ones they recommend.
• Tell your nephrologist if you notice dark urine, swelling, or a big change in blood pressure after an infection or vaccination.
• Ask whether they want a quick urinalysis and kidney labs afterward in your case.

Pregnancy planning comes up often because CKD stage, proteinuria, and certain meds may be incompatible with pregnancy.

Questions to ask:

• Which of my current meds are not pregnancy-safe, and what would we switch to beforehand?
• Should I meet with maternal-fetal medicine (high-risk OB) before trying to conceive?
• What is your plan for monitoring blood pressure and proteinuria during pregnancy?

Alcohol and "social drinks" come up a lot, mostly because people associate drinking with their social lives and are concerned about that vanishing overnight.

Questions to ask:

• With my current CKD stage and blood pressure, how much is it safe to drink?
• Are there reasons in my case to avoid alcohol completely (blood pressure, meds, liver issues, volume status)?

Many people ask about flank pain, cramping, twitching, fatigue, and other symptoms and whether IgAN is the cause.

A useful question for your nephrologist:

• "Is this likely from IgAN itself, from CKD effects (like anemia or fluid issues), or from medication side effects? What signs would make you worry?"

People also ask whether they are "in remission" or "stable."

Ask your nephrologist:

• What numbers would you personally call remission or stable (proteinuria range, eGFR slope), and over what time window?

This page is general education, not medical advice. If you have severe symptoms (inability to urinate, clots, high fever, severe flank pain, sudden swelling/shortness of breath), treat it as urgent.