Glomerulonephritis

@cehunt57 you are so kind!! I have messaged my brother and I hope he joins.

@dragonflylady
Overview
IgA nephropathy (nuh-FROP-uh-thee), also known as Berger disease, is a kidney disease. It happens when a germ-fighting protein called immunoglobulin A (IgA) builds up in the kidneys. This causes a type of swelling called inflammation that, over time, can make it harder for the kidneys to filter waste from the blood.

IgA nephropathy often becomes worse slowly over years. But the course of the disease varies from person to person. Some people leak blood into their urine without having other problems. Others might have complications such as losing kidney function and spilling protein into the urine. Still others develop kidney failure, which means the kidneys stop working well enough to filter the body's waste on their own.

There's no cure for IgA nephropathy, but medicines can slow how quickly it becomes worse. Some people need treatment to lower inflammation, reduce the spilling of protein into the urine and prevent the kidneys from failing. Such treatments may help the disease become not active, a state called remission. Keeping blood pressure under control and lowering cholesterol also slow the disease.

Immunoglobulin A (IgA) is a type of protein called an antibody. The immune system makes IgA to help attack germs and fight infections. But with IgA nephropathy, this protein collects in the glomeruli. This causes inflammation and affects their filtering ability over time.

Researchers don't know exactly what causes IgA to build up in the kidneys. But the following things might be linked with it:

Genes. IgA nephropathy is more common in some families and in certain ethnic groups, such as people of Asian and European descent.
Liver diseases. These include scarring of the liver called cirrhosis and chronic hepatitis B and C infections.
Celiac disease. Eating gluten, a protein found in most grains, triggers this digestive condition.
Infections. These include HIV and some bacterial infections.
Risk factors
The exact cause of IgA nephropathy is unknown. But these factors might raise the risk of getting it:

Sex. In North America and Western Europe, IgA nephropathy affects at least twice as many men as it does women.
Ethnicity. IgA nephropathy is more common in white people and people of Asian descent than it is in Black people.
Age. IgA nephropathy most often develops between the mid-teens and mid-30s.
Family history. IgA nephropathy appears to run in some families.

Products & Services
A Book: Mayo Clinic Family Health Book

@dragonflylady
I also have IgA Nephropathy. As jlferro1 stated in his comprehensive description of the disease, it often becomes worse slowly over the years, but it can hold steady. Like your brother, my initial finding was protein in the urine. Lupus was suspected, but after many blood tests and a kidney biopsy, I was diagnosed with IgA Nephropathy, and I was told it was an autoimmune disease. I, too, am of European descent (actually, I am first generation). My diagnosis was nearly 40 years ago, and I am still here, even though my prognosis was not positive!

My nephrologist also has started me on Farxiga, which is indicated to be protective of the kidneys. I also am on a remote blood pressure monitor, since controlling blood pressure is important in CKD. I stay well hydrated, NEVER take an NSAID (such as Advil, Ibuprofen, or Aleve) and am careful to limit (not eliminate) foods found to be harmful to the diseased kidneys; that includes red meat, bananas, tomatoes, avocados, etc.

Through the years, I have developed some heart issues (currently have a pacemaker), and I learned that heart problems very much affect the kidneys. So, tell your brother to see his cardiologist and take good care of his heart.

I am also on monthly infusions. However, they are not due to my IgA Nephropathy. They are not to suppress my immune system, but to increase it. You noticed that I use the prefix "CLL" because I was diagnosed with that a couple of years ago. Since leukemia often depresses the immune system leading to multiple infections, my infusion are to build it up.

I read the anxiety in your words, and I understand! When I was told I had a kidney disease - I pictured dialysis, transplantation, etc. I was devastated! Of course, those issues could come to pass. However, they also might NOT come to pass! You are wise to educate yourself (and your brother) and ask questions. Being informed helps. Follow the nephrologist's advice and know that it is possible to live many years with this disease. Wishing you all the best!

@bettycll Dear bettyell Thank You so much for your kind encouraging words! They sure lightened my heart considerably. I found out recently that my next oldest brother has developed symptoms and test results just like our oldest brother so it’s definitely a hereditary condition in my family. When it rains it pours!!! I’m wondering now what my older sister and I should do at this point?!?!

@dragonflylady Dear Dragonflylady! Thank you for your kind words! I am so grateful that I could lighten your heart a bit with my IgA Nephropathy experience. That's why MCC is so helpful; we can share with one another. I don't know if this disease is hereditary in my family. None of my sisters have it, but I do have a nephew who was recently diagnosed with it. I have a large group of relatives in Europe, and I have no idea of their health histories.

Regarding you and your older sister... I would be proactive in making certain that I had regular check ups to ascertain kidney function. As you are aware, your brother is getting treatment; there are now medications to help, so it is good to get diagnosed as early as possible. When I was initially diagnosed, there was no treatment - just monitoring. Steroids were sometimes used, but it was mainly guessing! At that time, I thought it was doubtful that I would make it to 80 - but I did! Your brother is fortunate to have you looking out for him!