Glomerulonephritis

Posted by dragonflylady @dragonflylady, 3 days ago

My oldest brother who is in his mid 70’s was just Dx with glomerulonephritis and the doctor is planning to give him infusions to suppress his immune system and start him on Farxia( not sure of spelling) can anyone tell me anything about this and what if any issues they had?? Thank you in advance

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@dragonflylady Glomerulonephritis is kinda an umbrella statement. First is figuring out the underlying cause before treatment starts. Here are some good links to read through. Sometimes the information is a repeat, but might be said in a different format. Has your brother been told the underlying cause? Why is his eGFR if he knows that?

From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/glomerulonephritis/symptoms-causes/syc-20355705
From the National Kidney Foundation: https://www.kidney.org/kidney-topics/glomerulonephritis
From the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/16167-glomerulonephritis-gn

My kidney disease falls into the glomerulonephritis category, as an autoimmune cased situation.
Ginger

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Profile picture for Ginger, Volunteer Mentor @gingerw

@dragonflylady Glomerulonephritis is kinda an umbrella statement. First is figuring out the underlying cause before treatment starts. Here are some good links to read through. Sometimes the information is a repeat, but might be said in a different format. Has your brother been told the underlying cause? Why is his eGFR if he knows that?

From Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/glomerulonephritis/symptoms-causes/syc-20355705
From the National Kidney Foundation: https://www.kidney.org/kidney-topics/glomerulonephritis
From the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/16167-glomerulonephritis-gn

My kidney disease falls into the glomerulonephritis category, as an autoimmune cased situation.
Ginger

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@gingerw
It started off with extremely high protein levels in his urine and no other symptoms. Then they finally did a kidney biopsy and through that he was diagnosed with glomerulonephritis as an autoimmune disorder same as yours. That’s about as much as I know except for the infusions (x2) he’ll receive so many weeks apart then given the medication to protect his kidneys etc. I am the baby of the family and he is the oldest and we are very close. We have a brother (74) sister(72) between us. They are healthy. I have 3 autoimmune diseases and as I’ve talked about my brother now has the one. We lost our dad in 2022 he was 92. I was extremely close to him. Our mother is living she is 94 and in surprisingly good health and very sharp mentally. I worry if something were to happen to my brother him being her oldest born what it would do to her. She depends on him more than us other 3.

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Profile picture for dragonflylady @dragonflylady

@gingerw
It started off with extremely high protein levels in his urine and no other symptoms. Then they finally did a kidney biopsy and through that he was diagnosed with glomerulonephritis as an autoimmune disorder same as yours. That’s about as much as I know except for the infusions (x2) he’ll receive so many weeks apart then given the medication to protect his kidneys etc. I am the baby of the family and he is the oldest and we are very close. We have a brother (74) sister(72) between us. They are healthy. I have 3 autoimmune diseases and as I’ve talked about my brother now has the one. We lost our dad in 2022 he was 92. I was extremely close to him. Our mother is living she is 94 and in surprisingly good health and very sharp mentally. I worry if something were to happen to my brother him being her oldest born what it would do to her. She depends on him more than us other 3.

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@dragonflylady It would be great if your brother can get in to see a renal dietician, who can help him set up a sound diet plan. Keeping close track of his kidney function is critical, and coordination/communication between everyone on his medical team is important. And your brother is part of that team, don't forget!

If his doctor can tell him what autoimmune condition he feels is the cause, that should be noted, also. Has he found out what that might be? There are several autoimmune conditions that can be behind the glomerulonephritis.
Ginger

REPLY
Profile picture for Ginger, Volunteer Mentor @gingerw

@dragonflylady It would be great if your brother can get in to see a renal dietician, who can help him set up a sound diet plan. Keeping close track of his kidney function is critical, and coordination/communication between everyone on his medical team is important. And your brother is part of that team, don't forget!

If his doctor can tell him what autoimmune condition he feels is the cause, that should be noted, also. Has he found out what that might be? There are several autoimmune conditions that can be behind the glomerulonephritis.
Ginger

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@gingerw I am curious what autoimmune diseases other than
#1- Lupus
#2- Diabetes
#3-Goodpasture Syndrome
#4- Vasculitis
#5- IgA Nephropathy
#6- Henoch-Schonlein Purpura
Is the above complete? Also has anyone reported groin and/or hip/pelvic pain? And can this be caused by exposure to lead? Is it hereditary??

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Profile picture for dragonflylady @dragonflylady

@gingerw I am curious what autoimmune diseases other than
#1- Lupus
#2- Diabetes
#3-Goodpasture Syndrome
#4- Vasculitis
#5- IgA Nephropathy
#6- Henoch-Schonlein Purpura
Is the above complete? Also has anyone reported groin and/or hip/pelvic pain? And can this be caused by exposure to lead? Is it hereditary??

Jump to this post

@dragonflylady Tracking down and diagnosing an autoimmune condition can be fairly complicated. Your list looks great, but there may be others to consider.

I honestly don't know if exposure to lead can be a cause of the glomerulonephritis. There could be a hereditary component to the condition.
Ginger

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Hi there. What stage of CKD is he in? If he is in ESRD (End Stage Renal Disease) then he is eligible for a transplant. I had interstitial glomerulonephritis. My mom gave me a kidney. I have never heard of this being called autoimmune disease. Glomerulonephritis is a kidney damage issue not an autoimmune condition. Unless he has Lupus. That is an autoimmune condition. Please let me know if I am wrong. If you go to his nephrologist with him, ask questions. Do not be shy. You have a right to know. Hope this helps

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Profile picture for dragonflylady @dragonflylady

@gingerw
It started off with extremely high protein levels in his urine and no other symptoms. Then they finally did a kidney biopsy and through that he was diagnosed with glomerulonephritis as an autoimmune disorder same as yours. That’s about as much as I know except for the infusions (x2) he’ll receive so many weeks apart then given the medication to protect his kidneys etc. I am the baby of the family and he is the oldest and we are very close. We have a brother (74) sister(72) between us. They are healthy. I have 3 autoimmune diseases and as I’ve talked about my brother now has the one. We lost our dad in 2022 he was 92. I was extremely close to him. Our mother is living she is 94 and in surprisingly good health and very sharp mentally. I worry if something were to happen to my brother him being her oldest born what it would do to her. She depends on him more than us other 3.

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@dragonflylady
Hi lady! What infusions is he getting? Procrit is an injection for anemia. Protein in the urine is common in the latter stages of CKD. The glomerular tubes are in the kidney which filter everything. Keeping the good things in and not sending it out. So these tubules are spreading apart and letting the protein out in his urine. If he is in the early stages of CKD, then they give patients a drug to slow the disease progression down. Otherwise, if he has been anemic, the only infusions I can think of, only because I have had them, would be low iron count. Kidney disease is a silent killer. I am guessing he has had symptoms and didn't think anything of them. Hope this helps a little bit.

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Hi again. I apologize. Glomerulonephritis can be autoimmune related if it was triggered by something else. I just researched it.

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Profile picture for jlferro1 @jlferro1

Hi again. I apologize. Glomerulonephritis can be autoimmune related if it was triggered by something else. I just researched it.

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@jlferro1 thank you for sharing. I want to learn as much about this topic as possible. My brother actually didn’t know he had any issues with his kidneys until he went for a routine check up and they found the high protein levels and blood in his urine. He was treated for a UTI infection and the blood resolved but the protein didn’t. The only complaint he had was severe pain in his groin and he was thinking he had injured himself. Don’t know if this had anything to do with what’s happening with his kidneys but this was his only complaint. After further research and talking to my brother he said if he was correct IgA Nephropathy is what the doctors told him he has. And this fits with everything I’ve read. European descent. Hereditary- our great grandfather ( in the late 1800’s or early 1900’s ) died with what they called kidney disease that’s all we know. He was exposed to dangerous solvents for YEARS at his job. Now I don’t know if any of these things have anything to do with his condition but it’s what I’ve read during my investigations.

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@dragonflylady welcome to Mayo Clinic Connect. I’ve been thinking about you and your brother. I’ve got some experience with autoimmune disease (insulin dependent diabetes), a kidney condition (chronic kidney disease / CKD) and immune suppression. I had a pancreas transplant and am required to have immune suppression for life to prevent rejection. In my situation these conditions are all related. Sometimes the treatment can be complicated and challenging but it is so worth it to be in the best health I can be. I would like to invite your brother to join Mayo Clinic Connect too. There are lots of groups and discussions where he will find useful information: Kidney Conditions, Chronic Kidney Disease, Autoimmune… There is always hope & encouragement here.

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