Diagnosed with IgA Nephropathy?

What You Need to Know

If you or a loved one has been diagnosed with IgA Nephropathy, also called IgAN for short, it’s
normal to feel scared or uncertain.

You may worry about what it means for your future or how it might affect your family, career and other
life dreams. You are not alone. The IgA Nephropathy Foundation is here for you. We offer information,
education, support, and hope for a cure.

Use this booklet to learn more about:

• IgA Nephropathy and some of the terms you may hear. How do you say IgA
Doing so will help you feel more in control and in charge
Nephropathy anyway?
of your kidneys and overall health.
It’s pronounced
• The tests used to check how well your kidneys are
“nuh-FROP-uh-thee.”
working and how the results can help guide your treatment.
• How to manage IgAN and help protect your kidneys. Although it is rare, IgA
Nephropathy is among the
• Ways to advocate for yourself – for example, by knowing
most common kidney diseases
what questions you might want to ask. We know that living
in younger people.
with a chronic disease like IgAN can also affect your mental
health and relationships, so speak up and build your village
of support.

You can also find helpful worksheets at igan.org to keep track of important information, including
your lab results, blood pressure readings, medications, and how you are feeling and coping in general.
 What is IgA Nephropathy?
IgA Nephropathy is a rare autoimmune disease that affects
the kidneys. It happens when immunoglobulin A travels
to and builds up in the kidneys. Immunoglobulin A is a
protein we all have. It usually helps your body fight
infection. In this case, it ends up where it’s not supposed
to be.

Over time, IgA deposits can clog the tiny filters in the
kidneys. This damages the kidneys, and makes it harder
for them to filter and get rid of extra water and waste in
the urine. Cross section of a kidney

You have two kidneys. They are

bean-shaped organs about the size
As of now, a kidney biopsy of your fist.
is the only way to know Their main job is to filter and clean
for sure if someone has the blood. In fact, the kidneys filter
about a half cup of blood every
IgA Nephropathy. For this
minute!
procedure, the doctor
Each kidney has a million tiny
removes a small piece of filtering units called glomeruli. With
kidney tissue and examines it IgA Nephropathy, IgA collects in
and clogs these filters. This also
under the microscope to look
causes protein to leak into the urine,
for disease or damage. which can result in more damage
to the kidneys. IgAN affects both
kidneys.

It can be very difficult to learn that you have

IgA Nephropathy. But there are steps you can
take to slow the rate of loss of kidney function,
help prevent kidney failure and feel better.
Today, there are more treatment options for
IgAN than ever before, with many more drugs
in clinical trials.

Try not to let the condition define you. Instead,

play an active role in your care, ask questions
and know we are here for you with information
and support.

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It’s important to remember that no two people with IgA Nephropathy are the same. Some
people have no symptoms, while others may feel very unwell. For some patients, kidney function
stays about the same for a long time. For others, kidney function can decline quickly. Some patients
will need to start dialysis or get a new kidney at some point.

How does it progress or get worse?

It’s different for every person. The good news is that more often than not, IgA Nephropathy
progresses slowly.

Stay the same for Kidneys may slowly Kidneys may fail
many years lose function completely

You’ll have regular More frequent Dialysis or a kidney

check-ups to keep medical appointments, transplant will be
an eye on your labs and medications needed
kidney function are needed

While there is no cure for IgA Nephropathy, there are steps you can take, together with your care
team, to manage your symptoms and slow down how quickly your kidneys become damaged.

How to monitor your kidney health

With IgA Nephropathy, blood cells and protein can make their way into the urine. This
doesn’t happen with healthy kidneys. The good news is that simple urine and blood
tests can be used to see how well your kidneys are working to filter your blood.

Results from these tests will help to:

• Monitor your kidney function and look for
changes (there can be ups and downs, so
Try to get your labs drawn
the key is to look at trends over time)
• Know the stage of your kidney disease at the same time of day. It’s
• Help guide treatment decisions normal to feel nervous while
• Check for certain health issues that can waiting to see what your
develop when the kidneys aren’t working latest tests will show. Take
properly (for example, anemia, low levels of
vitamin D, a build up of acid in the blood, a deep breath and focus on
heart disease) what you can control.

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 Your kidney biopsy results will also give you and your health care team important information about
your kidneys.

Common tests used

A blood test to measure your GFR (creatinine A urine test to look for protein or albumin
is measured in the blood and it is used in a in the urine (this is called proteinuria or
mathematical formula to calculate the GFR) albuminuria)

GFR stands for Glomerular Filtration Rate. Your doctor or nurse may use terms like
urinalysis, urine dipstick test, urine albumin,
• A GFR of 60 or higher is in the normal
UACR, UPCR when talking about urine tests.
range.
• A GFR below 60 may mean kidney disease. With healthy kidneys, no protein/albumin is
• A GFR of 15 or lower may mean kidney found in the urine. But with IgAN, protein/
failure. albumin can make its way into the urine. The
less protein/albumin in your urine, the better.
Creatinine levels go up in your blood when
your kidneys are not working properly. So as Albumin is a type of protein and may be
creatinine goes up, GFR goes down. measured rather than total protein.
Your GFR helps you know your stage of kidney
disease.

Source: NIDDK Source: NIDDK

Your GFR or eGFR and the amount of protein in the urine can change. That’s why it is helpful to see
trends over time. Use our worksheet, Tracking Your Labs, Kidney Health and Blood Pressure, to
write down your lab results. Always ask questions if you are unsure about what your lab results mean.

Visit our Resources section

at igan.org to download
these and other tools.

Don’t forget to listen to your body too

In addition to your labs, let your doctor know if you notice any signs that could mean your kidney
function is getting worse. For example:
• Red or tea-colored urine for many days • Feeling more tired than usual
• Severe headaches • High home blood pressure readings
• Pain near your kidneys in the lower back • Sudden changes in appetite
• Swelling or puffiness in your face, legs,
ankles, or feet
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Watching your blood pressure is important for your kidneys too
Your kidney (nephrology) team has likely told you how important it is to manage your
blood pressure. That’s because high blood pressure and kidney disease often go hand-
in-hand – and each makes the other worse.

High blood pressure can damage or weaken

the blood vessels of the kidneys, ulimately
damaging the kidneys.

Chronic kidney disease

Healthy kidneys usually help control blood
pressure. When they don't work well, it raises
blood pressure.

This is why some of the main medicines to manage IgA Nephropathy include those that lower blood
pressure. Part of your treatment plan will be to monitor and track your blood pressure at home. Use
our worksheet to write down your blood pressure numbers. You’ll also find tips for how to get an
accurate reading.

Treatment options to help manage IgAN

Following a healthy Medications to ease Clinical Trials to look for Dialysis or needing a
lifestyle symptoms or slow the new and more targeted new kidney for more
progression of the treatments advanced stages of
disease by lowering the disease
blood pressure and
reducing the amount of
protein in your urine

The main goal of treatment is to prevent or delay kidney failure and the need for dialysis or a new
kidney. Medications and lifestyle changes can help to ease symptoms and slow down how quickly
your kidneys become damaged. Work with your kidney team to develop a treatment plan that works
for you.

Your treatment will depend on:

• Your current stage of kidney disease or how much kidney damage you have
• Any health issues you develop related to poorer kidney function; for example, a low number of
red blood cells (anemia) or swelling in the legs or ankles (edema)
• Other health conditions you might have, such as heart disease, diabetes or high cholesterol
• What’s most important to you when it comes to managing IgA Nephropathy, so speak up and
advocate for yourself

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 Healthy lifestyle habits
Taking care of yourself and making healthy choices can help protect your kidneys.

Switch to a kidney-friendly diet as best you can. What you eat plays a role in your
kidneys and overall health. It’s important to cut back on salt (sodium) and choose healthy
foods.

Get moving. Exercise is good for your body and mind. Finding ways to move your
body more is good for your heart, your kidneys and your overall health. It also promotes
better sleep and can boost your mood and energy levels.

Stay at a healthy body weight. Ask what you should weigh.

Get enough good quality sleep. Aim for 7-8 hours each night.

Quit or don’t start using tobacco. Make a date to quit. There are resources to help.

Find ways to lower stress. Know your limits and speak up if you need more support. Try
yoga, deep breathing or other types of meditation.

Make sure your other health conditions are well managed. These can also harm the
kidneys. For example, if you have diabetes, try your best to keep your blood sugar low.

Medications
Medications – coupled with healthy lifestyle changes – are an important part of any
IgAN treatment plan.

Exactly which medications, or combination of medications, your doctor recommends will

depend on how well your kidneys are working and what medicines you’ve already tried.
Visit igan.org for more information on specific medications that are used. Here you will
find a worksheet to keep track of your medications and treatments you’ve tried before.

Be sure to ask questions and learn why you are taking each medication.

Clinical Trials
There are many promising clinical trials underway “The future is bright for
to find better, more targeted treatments for
IgA Nephropathy. people living with IgaN.
It’s an exciting time of
Ask your care team if a clinical trial is an option for discovery and new
you, and which one might be a good fit. You will treatments.”
need to meet the study criteria to be able to
participate (for example, a GFR within a certain - Bonnie Schneider
range, not being on a steroid for a period of Co-founder of the IgA
time, etc.). For a list of active clinical trials, visit Nephropathy Foundation
igan.org/clinical-trials.
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Dialysis or kidney transplant for kidney failure
Not everyone with IgA Nephropathy will need dialysis or a kidney transplant. These
treatments are for people with advanced kidney disease. But it’s good to know these are
options if you get to or are nearing that stage.

• Dialysis – uses a machine to remove wastes and excess fluid from your blood
• Kidney transplantation – replaces the damaged kidneys with a donated kidney.

In the U.S., patients can be assessed to get on the transplant list when their GFR is less than 20. A
kidney transplant doesn’t happen until it is much lower. The exact timing can vary by center though,
so you may wish to start the conversation or ask for a referral earlier.

Getting a new kidney doesn’t cure IgA Nephropathy. But it can help you live longer and with a better
quality of life. IgA Nephropathy may come back in the transplanted kidney, but your kidney doctor
will be watching out for this. Many of the new treatments for IgA Nephropathy are also likely to work
in the new kidney.

Your emotional and mental health can affect your physical health too.
Talk about your emotions and how you are coping.

Tune into your emotional health

Living with IgAN can feel overwhelming at times.
Be sure to:
• Share your feelings with your care team so they
can help you.
• Join a support group with other people living
with IgA Nephropathy.
• Check out our Coping and Caring for Your
Mental Wellbeing information and tools at
igan.org/mental-health/.

Advocating for yourself

One of the best things you can do to feel more reassured along your IgAN journey is to advocate
for yourself.
• Learn all you can about the disease. Visit www.igan.org for information, tools and support.
• Find a kidney specialist you trust, someone who is knowledgeable about IgA Nephropathy
and will work with your other health care providers to make sure everyone is on the same page
to support your health.
• Remember, it’s always OK to get a second opinion. Follow your gut.

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Ask questions. Here are some questions that people living with IgA Nephropathy
have found helpful:
• How often should I have blood and urine tests done?
• What do my latest lab results mean?
• What could affect my lab results (for example, being dehydrated, eating a lot of salt or protein
beforehand, etc.)?
• Can you explain the MEST-C score and other findings from my kidney biopsy and what they mean?
• Should I be taking my blood pressure at home?
• Why are you recommending this particular medication? How will it help? Are there side effects I
should watch for?
• Can you refer me to a dietitian who specializes in kidney disease?
• I often have swelling in my hands, legs and feet. Could it be related to my kidneys?
• When should I call your office in between appointments (for example, changes in urine color or
frequency, higher blood pressure readings, noticeable swelling, etc.)?
• How can I best manage IgA Nephropathy while also living my life?
• How do I make decisions about planning a family or pregnancy?
• What clinical trials are available, and which might be a good fit for me?
• I know many people never progress to kidney failure, but when would we know if I need to put my
name on a transplant list?

Resources to help
The IgA Nephropathy Foundation has a growing number of resources, printable tools and ways to
connect with other people affected by IgAN to help you on your journey. Join us today!

Peer Support: IgAN Journey: Patient Aid:

Join a virtual support
group to connect
Monthly podcast
covering important
$ Learn about
grants available
A 2-day, information-
with others on the topics to help with
packed meeting to
same path; one for treatment costs
share stories and
patients and for ...and much more.
learn about IgAN
caregivers

For more information, or to get involved, visit us at igan.org.

Published 01/24