Everything you need to know about IgA Nephropathy (IgAN)

Introduction

Living with IgA nephropathy (IgAN), also known as Berger’s Disease, can feel challenging. But you're not alone! Many people, just like you, are finding ways to manage this condition and lead fulfilling lives. IgAN is a condition where the body's immune system mistakenly creates an abundance of a protein called immunoglobulin A. Over time, this protein can cause inflammation, gradually affecting the kidneys.

Learning how to live with IgAN, or support someone in your life who is, starts with understanding this condition. Let’s dig into everything you need to know to detect, diagnose, treat, and manage IgAN.

IgA nephropathy symptoms

‍While millions of people are impacted by this chronic kidney condition worldwide, many patients struggle to understand the symptoms of IgA nephropathy. One reason is that IgAN symptoms are often non-specific and can be easily confused with other conditions. The severity of symptoms can depend on the stage of IgAN and how much the condition has progressed.

A few symptoms to look out for are:

Hematuria (blood in the urine, giving it a pink, red, or brown color)
Proteinuria (excess protein in the urine)
High blood pressure
Swelling in the lower extremities (edema)
Fatigue

IgA nephropathy can also impact children. Their symptoms may be similar to adults but may also include:

Abdominal pain
Joint pain
‍

Some people may not experience symptoms at all — everyone's journey with IgA nephropathy is unique. At PicnicHealth, we’re working to make sure every patient’s experience is heard by empowering them to take control of their medical records and participate in research on their terms. Documenting patients’ day-to-day experiences (beyond controlled clinical trials) will help expand our understanding of IgAN and move detection, research, and treatment forward. If you or a loved one are experiencing any of these symptoms, be sure to reach out to your healthcare provider, who can help diagnose this condition.

Diagnosing IgA nephropathy

Going to the doctor can be intimidating, but it’s an important first step in getting to the bottom of your symptoms. Getting tests done helps paint a clear picture of what's happening in your body, empowering you and your healthcare provider to craft a treatment plan tailored specifically for you. Once you have some answers, you can figure out a plan to move forward together.

The journey to diagnosing IgA nephropathy often begins with common, non-invasive procedures like urine and blood tests to check on your kidney health. In a urine test, your healthcare provider will look for blood or protein, which indicates potential kidney problems.

For blood tests, they will screen for increased levels of creatinine or urea, which are waste products that kidneys should efficiently filter out. The glomerular filtration rate (GFR), which measures how blood is filtered by the kidneys each minute, is also an important diagnostic test.

If any of these tests show abnormal levels, the next step your provider may take is to order imaging tests, like an ultrasound, to assess the size and structure of the kidneys.

Medical tests such as blood and urine tests can provide valuable information about kidney function, and the presence of IgAN, a kidney biopsy is the most definitive test for diagnosing the condition and assessing how much it has progressed.

How kidney biopsies work for IgA nephropathy

A kidney biopsy is a medical procedure where a small piece of kidney tissue is removed and examined under a microscope. Once your doctor has a sample, they can confirm an IgA nephropathy diagnosis and figure out the best next steps based on the condition of your kidneys. Getting a biopsy might sound a bit daunting, but your care team will ensure you are kept comfortable throughout the process.

Here’s what you can expect.

Getting ready for the biopsy: Before the actual biopsy takes place, your doctor will run some tests to check how well your kidneys are functioning and make sure you're in good shape for the procedure. You might be asked to avoid certain foods and medications for a little while beforehand. This helps lower the risk of complications like bleeding or infection.

Numbing the area: On the day of the biopsy, you'll be given a local anesthetic. This will numb the area where the biopsy needle goes in, so you won't feel any pain. In some cases, you might also receive a sedative to help you relax and stay comfortable.

Taking the sample: Once the area is numb, your doctor will guide a biopsy needle through your skin and kidney. The needle's path is usually tracked using ultrasound or a similar imaging method to ensure it's going in the right spot. Your doctor will then use this needle to take a small sample of kidney tissue.

Recovery and monitoring: After the biopsy, most patients can leave the hospital the same day or around 12 to 24 hours after. The medical team will keep a close watch on you to make sure you're stable and that no complications arise. To help minimize the chance of bleeding, you'll be asked to lie down for a few hours. You should also take it easy for a bit, avoiding activities like heavy lifting or strenuous exercise to give your kidney a chance to heal.

After your biopsy is completed, you should expect to hear back from your doctor within several days. You will work with your care team to come up with a plan based on the stage of IgAN you’re at, as well as the condition of your kidneys.

Understanding IgA nephropathy stages

Understanding the progression of IgA nephropathy is critical to effectively managing the condition. There are four stages of IgAN, each corresponding to the level of kidney function. The good news is the earlier you catch and start managing IgAN, the better your chances are of maintaining kidney health.

Here's a simplified breakdown of the stages of IgAN.

Stage 1: The early stage of IgA nephropathy might be very subtle, perhaps without any noticeable symptoms at all. You might have mild signs like blood or protein appearing in your urine.

Stage 2: As your condition advances to this stage, your kidneys might experience a bit of damage, and you could notice a slight drop in their performance.

Stage 3: This stage is further divided into two parts, 3A and 3B. At this point, you might experience more severe kidney damage and a considerable decrease in your kidney function.

Stage 4: Moving into stage 4, your kidneys could have significant damage, accompanied by a substantial drop in their function.

Stage 5: This is the final stage of IgA nephropathy, also known as end-stage renal disease (ESRD). At this point, your kidneys are not able to function on their own. You might need to undergo dialysis or receive a kidney transplant to continue living a healthy life.

Keeping track of your symptoms at each stage is crucial to manage your health properly. One helpful tool is PicnicHealth’s Timeline. Timeline gathers all of your medical records and organizes them chronologically to make it easy to keep your loved ones in the loop, brief new care providers on past visits, and share your experiences with researchers if you want to. Through a strong health management plan and close collaboration with your doctor, you can often slow down the progression of IgAN. While there is no cure for IgAN, there are treatment options for managing symptoms and preventing progression. With a combination of treatment and lifestyle changes, many patients can go on to live a fulfilling life.

Treatment options for IgA nephropathy

Living with IgAN can be physically and emotionally taxing. However, with the right treatment and support, many people are able to manage IgAN. Finding the right treatment options will be a collaborative process with your care team. Treatment generally consists of medication, therapy, and procedures that are designed to manage symptoms and prevent progression. The recommended approach will depend on the IgAN stage you’re at, other conditions you have, and the medications you’re on.

Medications
Two specific medications, Tarpeyo (budesonide) and Filspari (sparsetan) can help manage IgAN. Here’s how they work.

Tarpeyo can reduce proteinuria and slow down kidney function decline.

Filspari works on two key pathways involved in IgAN progression: the complement system, part of the immune system, and the epithelial-mesenchymal transition (EMT) pathway. Filspari helps regulate these processes, reducing inflammation, slowing down the progression, and protecting kidney function.

Corticosteroids, a common anti-inflammatory drug, can improve IgAN symptoms by reducing proteinuria and lowering the risk of progressing to ESRD. However, these may come with side effects such as weight gain, high blood pressure, and fluid retention. The use of corticosteroids should be considered individually in consultation with your healthcare provider.

Immunosuppressants, another class of medications, can also aid in IgAN treatment by reducing proteinuria. However, they come with infection risks and other side effects and are typically reserved for those with significant proteinuria or deteriorating kidney function.

Procedures
‍In some scenarios, dialysis or kidney transplantation may be necessary for patients with IgAN. Other options include ACE inhibitors or ARBs to lower blood pressure and reduce proteinuria.

All of the treatment options above come with their own pros and cons, as well as side effects. It’s important to maintain open communication with your care team so you can work together to find the best treatment plan for you.

Medication and procedures are only one part of IgAN treatment. IgAN can also be managed with lifestyle changes like maintaining a healthy diet, exercising regularly, avoiding smoking, and limiting alcohol intake.

IgA nephropathy diet and lifestyle changes

Although we can't reverse IgA nephropathy, modern medicine and lifestyle adjustments can slow its progression and manage its symptoms effectively. This helps people living with IgAN maintain a better quality of life. Dietary changes are one of the best ways to support kidney health, which is crucial for IgAN patients.

Here are a few dietary approaches to help manage IgAN.

DASH (Dietary Approaches to Stop Hypertension) diet.
This diet is often recommended for those with chronic kidney conditions.The DASH diet focuses on eating nutrient-dense foods such as:

Fruits
Vegetables
Lean Meats

It also limits:

Sodium
Red meat
Saturated and trans fats
Added sugars.

This dietary approach can help lower blood pressure, which aids kidney function, promotes weight loss, and reduces the risk of developing chronic conditions like cancer or diabetes. However, some foods that are technically allowed in the DASH diet may not be suitable for those with kidney conditions. Always check in with your care team before making drastic changes to your diet.

IgA nephropathy can cause an imbalance in minerals in the body, so it’s important to avoid foods with excess sodium, potassium, and phosphorus. Sometimes, even healthy foods have too much of one kind of nutrient or mineral. Keeping track is key.

Some foods to avoid are:

Canned goods (high in sodium)
Whole wheat bread
Bananas
Snacks like chips and pretzels
Potatoes
Sweet potatoes
Apricots
Pickled foods
Brown rice
Avocados
Dairy products

Remember, dietary needs vary between individuals. Always consult your doctor or primary care physician before making significant dietary changes.

While IgAN can't be reversed, it can be managed effectively with medical technology, treatments, and lifestyle changes. By adopting beneficial diets, avoiding certain foods, and working closely with healthcare providers, people living with IgAN can lead healthier, more fulfilling lives.

How PicnicHealth can help?

Keeping track of your IgA Nephropathy care journey can be tough, and PicnicHealth is here to help. Here are a few tools that make this easier:

‍Medical record collection: We securely collect your medical records, including lab results, test reports, and treatment history, and store them in one location you can easily access or share with anyone you’d like to keep in the loop, like new providers or family members.

‍Personalized health dashboard: Our platform makes it easier to track your health data, monitor symptoms, and learn about IgA Nephropathy care.

Living with IgAN can be difficult, but keeping track of your medical records doesn’t have to be. PicnicHealth's resources take care of the hard stuff, like organizing all of your past medical records in one place, so you can focus on taking care of your kidney health. When you join the PicnicHealth community, you become part of a group of people helping to move IgAN treatment forward by participating in easy and accessible medical research – on your terms. Get started with PicnicHealth to experience easier medical records management and patient-powered research.

Conclusion

PicnicHealth is here to help you take control of your IgAN journey. By creating an account, you get access to a personalized timeline that organizes all of your medical records in one secure place, and opportunities to participate in IgAN research studies from the comfort of your own home. Get started.