Fibrillary glomerulonephritis

@nancygreen Welcome to Mayo clinic Connect. Having a rare kidney disease can be very frustrating, most definitely! I myself was diagnosed with Type III Collagenofibrotic Glomerulopathy in 2015. There have been less than 50 people in the world ever diagnosed with it!

Fibrillary glomerulonephritis is also considered a rare disease, with no known cause, but certain autoimmune conditions may lend a favoring to it. Here is a pretty good article from the University of North Carolina Kidney Center, that you might fond useful:
https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/fibrillary-glomerulonephritis-gn/
Are you able to see a medical team at a major teaching hospital, or even Mayo Clinic?
Ginger

What what a great job you’re doing Colleen to keep track of all of us and our conditions.. Thank you!

I am going to UPMC in Seneca Pa. April 3rd for a Hematologist my gfr is good but my kidneys are not filtering and my protien creatine ratio was 9.99 yesterday

I have had Fibrillary Glomerulonephritis for 6 years now. I am stable for now. 8 rounds of Rituxan since biopsy diagnosis. It helped. I was wondering if anyone else here suffers from fatigue, joint pain, stiff joints, elevated sed rate, elevated CRP and a feeling that my body is fighting something and a overall unwell feeling. My Nephrologist said she believes that Fibgn is also associated with some type of immune dysfuction. I have tested negative for most rheumatological diseases. But I have symptoms of something. The research of this disease shows once proteins start depositing in kidneys, the immune system starts attacking. My doctors and I have noticed that while i am on immune suppressent meds, my symptoms get better and kidneys are stable. While i am off immune suppressents, body feels terrible and amount of protein in urine rises. I wish there was more information about this disease.

Have you seen a hemotologist my Kidney Dr. is sending me to one

Hello All, I've recently been diagnosed with Fibrillary Glomerulonephritis following a years worth of testing and struggling with "what is happening to me". I have a great local Medical Team who have really pushed on finding the answer...they did FibGN. I have researched everything about the rare disease I can find papers/reports/studies/opinion, etc. Unfortunately, my Team nor their associates have any experience with FibGN so I now know as much as I can. Fortunately I have a scheduled appointment at Mayo Clinic Rochester MN in a couple of weeks which believe it or not I am excited about it. I have accepted the disease, it is what it is, so I will do whatever it takes to push forward and stop any progression, I'm on the high side of Stage 3a CKD.
I read this entire blog this evening and immediately joined the Connect particularly this chain. You all a very caring and sharing of info which is critical in order for us all to have the healthiest of lives we are allowed to have. I think we, with the helping hand of God, are the masters of our own care and treatment.
My biggest struggle has been/is the constant fatigue (I also have Long Covid), insomnia, and what and how to eat. I have lists of what Not to eat but what can I really eat. I have a follow on appointment with a RN Nutritionalist/Dietician who specializes in Renal Diets so hopefully that will ease thing a bit. I also purchased "The Renal Diet Cookbook for the Newly Diagnosed" it seams as though there are some really good meal preps however there are some conflicting recipes, i.e. my Nephrologist and Dietician state no avocado however there is a recipe with avocado. Don't get me wrong it is a good book and worth the purchase.
Jennifer208 will you share with me the name of the facility and doctor in Atlanta?
I'm through rambling, thanks for "listening".
Keep Pushing On!

@irishman Welcome to Mayo Clinic Connect. Having a rare disease can be intimidating for a patient, and also their medical team!

The renal diet/kidney diet is often controversial. You can find outstanding articles from -American Kdney Foundation https://www.kidney.org/nutrition
-Davita Kidney Care: https://www.davita.com/diet-nutrition/kidney-friendly-cookbooks?gclid=CjwKCAjw5pShBhB_EiwAvmnNV_Ko4oHxv3GP4nUoWKv9a0FNOpnhTi_96MNJzjwWpU-TUuQw54r8zhoCsMsQAvD_BwE&gclsrc=aw.ds
-Fresenius Kidney Care https://www.freseniuskidneycare.com/recipes-and-nutrition
What most people will tell you, is to make sure you eat quality protein, limit sodium/potassium/ calcium/phosphorus. Fresh fruit and veggies are good, the fewer processed foods the better. Do your research, question the renal dietician you see.

Be gentle on yourself.
Ginger

I have been diagnosed with crescentic fibrillary glomerulonephritis and I am looking for any information about it. Doctors are telling me I am going to have to go on dialysis. I am also wondering if I would be eligible for a kidney transplant at age 64.

@triblecane Welcome to Mayo Clinic Connect. Having been told you have a rare kidney concern can be very concerning, I know. In 2015 I was formally diagnosed with an ultra-rare autoimmune kidney disorder, myself.

You do not mention how the doctors determined this condition. was it through a kidney biopsy? Also of importance right now is your eGFR [estimated glomular filtration rate] and creatinine level. As to your question about a kidney transplant, recipients can be up into their 70s! Criteria is based more on overall health, not a specific age.

Here is what Mayo Clinic has to say about glomerulonephritis: https://www.mayoclinic.org/diseases-conditions/glomerulonephritis/symptoms-causes/syc-20355705

And from rarediseases.org is this article: https://rarediseases.org/rare-diseases/fibrillary-glomerulonephritis/

Note the crescentric feature of what your doctors are telling you, is a location where the strands are placed.

Dialysis may be required if your kidneys are not able to handle disposing of waste product each day. That's why I was asking about your current kidney function level, expressed as the eGFR number.

Does this help you? What further questions do you have?
Ginger

Hello everyone! I was diagnosed with Fibrillary Glomerulonephritis in Feb. and finding any answers has been more difficult than I expected. I was getting tested to donate a kidney for a brother when they noticed I had something going on too. Which I later found out is FGN. My eGFR is still 121. I went through a cycle of rituximab. But my kappa light chains are high and so is the kappa/lambda ratio… has this happened to anyone else? My hematologist thinks the FGN is causing the rise but he wants me to do some blood work to see if the rituximab did anything to those numbers.