IgA Nephropathy (IgAN), also known as Berger’s disease, is a rare kidney disease that can cause issues with the kidneys’ ability to filter waste from the bloodstream. IgAN occurs when a compound called immunoglobulin A (IgA) builds up in excess within the kidneys, resulting in inflamed tissue and other complications. Thanks to modern treatment methods, IgAN can be effectively managed and its prognosis significantly improved. However, if left untreated, IgAN can lead to serious health problems, underscoring the importance of timely diagnosis and treatment.
IgAN may progress slowly in some individuals over a span of years or even decades, while in others it can progress more quickly. Symptoms may vary from person to person, and some may experience blood in their urine, while others may have proteinuria (the presence of abnormal amounts of protein in the urine) (1). The disease can also lead to complications such as chronic kidney disease, high blood pressure, and end-stage renal disease (ESRD).
Living with IgA nephropathy can be challenging, both physically and emotionally. However, with proper treatment and support, many people are able to manage their symptoms and live fulfilling lives. While the disease may pose some challenges, it’s important to remember that there are many resources and options available to help patients cope and thrive.
If you think you might have IgAN or experience symptoms of this condition, it’s important to seek medical advice. Ask your doctor about getting tested to determine whether you have IgAN. Additionally, don’t hesitate to ask questions and discuss your concerns with your healthcare team. They can help guide you on the best course of action and provide support and resources as needed.
Currently, there are two medications that may be prescribed for IgAN, Tarpeyo (budesonide) and Filspari (sparsetan). Tarpeyo can help reduce proteinuria and slow the decline in kidney function.
Filspari, on the other hand, works by selectively targeting two critical pathways in the disease progression of IgAN: the complement system and the epithelial-mesenchymal transition (EMT) pathway.
The complement system is a part of the immune system that helps to fight off infections, but it can also contribute to inflammation and damage in the kidneys in people with IgAN. Filspari helps to regulate the complement system, which can help to reduce inflammation and slow down the progression of the disease.
The EMT pathway is a process that occurs when kidney cells transform into a different type of cell, which can contribute to scarring and damage in the kidneys. Filspari can help to inhibit this process, which can help to slow down the progression of the disease and protect kidney function.
Like other treatments for IgAN, both medications can cause side effects and may not be suitable for all patients. Talk to your doctor to see if you are a candidate.
In what ways can corticosteroids improve IgAN symptoms? Corticosteroids are a common anti-inflammatory drug generally prescribed to patients suffering from rheumatologic illnesses like lupus, vasculitis, and rheumatoid arthritis. While more research and data are necessary to continue to develop better treatment methods for IgAN, some studies have shown that corticosteroids are effective at reducing proteinuria and improving the risk of progression to end-stage renal disease (ESRD) in IgAN patients (2).
Are there any downsides to using corticosteroids for IgAN? Some patients who have been prescribed corticosteroids may experience one or more side effects including upset stomach or nausea, weight gain in the face, back of the neck, and torso, high blood pressure, and a buildup of fluids within the body, which can cause the lower legs to swell. Not all patients are candidates for this type of therapy, and the decision to use corticosteroids should be made on a case-by-case basis. Your healthcare provider can provide you with more information and help you make an informed decision about whether corticosteroids are right for you.
What are immunosuppressants and how do they impact IgAN treatment? Immunosuppressants are a class of medications that suppress the immune system, which can be useful in treating some types of autoimmune diseases. In IgAN, immunosuppressive therapy can be effective in reducing proteinuria.
However, immunosuppressive therapy comes with a risk of infection and other side effects. It is typically reserved for patients who have significant proteinuria, deteriorating kidney function, or other factors that suggest a high risk of developing end-stage renal disease (ESRD).
In some cases, it may be necessary for patients to go on dialysis or receive a kidney transplant for IgAN. While dialysis can be a helpful way to support the body’s struggling kidneys, the procedure itself can be expensive and disruptive. A kidney transplant can be a good option for some patients, but not all patients are candidates for this type of therapy.
Doctors may also choose to prescribe ACE (angiotensin-converting enzyme) inhibitors or ARBs (angiotensin receptor blockers) to help patients with IgAN. These medications can help lower blood pressure and reduce proteinuria, and they are generally well-tolerated. It should be noted, however, that ACE inhibitors and ARBs are not intended to be taken together, as the combination of the drugs can lead to dangerously low blood pressure or other serious health complications.
In addition to medication, lifestyle changes can also help manage the symptoms of IgAN. Eating a healthy diet and exercising regularly can help control blood pressure and cholesterol levels. It is also important to avoid smoking and limit alcohol consumption.
If you have been diagnosed with IgAN, it is important to work closely with your healthcare provider to monitor your kidney function and adjust your treatment plan as necessary. Early detection and treatment of IgAN can help prevent further kidney damage and improve long-term health outcomes.
Resources:
https://www.mayoclinic.org/diseases-conditions/iga-nephropathy/symptoms-causes
Join our early breast cancer registry to be counted and share your story with research.
Learn More
List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.
Join Now
Download this list to save onto your phone or print it out for your fridge!
Download this poster to save onto your phone or print it out for your fridge!
Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
Before your video call:
On the day of your video call:
Receive up to $55 for your participation:
You’ll receive an email from Celestra Health with your account details. Follow those steps to set up your account.
