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Immunotactoid glomerulonephritis
Autoimmune Diseases | Last Active: Aug 17, 2019 | Replies (11)Comment receiving replies
Hello @abrunslori, Welcome to Connect. I was not familiar with your diagnosis so did some search and found a few sites that I'm hoping may be helpful.
Immunotactoid glomerulopathy
-- https://rarediseases.info.nih.gov/diseases/12048/immunotactoid-glomerulopathy
-- https://www.malacards.org/card/immunotactoid_glomerulopathy
I'm tagging a fellow mentor @gingerw as she has discussed glomerulopathy in a post and may be able to share some information with you. Did your doctor suggest any treatments or options for your condition?
Replies to "Hello @abrunslori, Welcome to Connect. I was not familiar with your diagnosis so did some search..."
Hi John. Thanks so much for the information. Anything I can get a course would be helpful. No there is no set treatment for this disease apparently. The end results will be kidney failure. Patience in past have all been different no one has the same symptom or any consistency to the disease. The only suggestions of course are steroids chemotherapy and course kidney replacement. I am starting a more holistic approach with some herbalism and more alternative medicine
Thanks again for the links John.
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Thank you for tagging me in this conversation. @abrunslori, I was diagnosed with Collagenofibrotic Type III Glomerulopathy in March 2015, and have been monitored closely since then. My GFR is currently 33%, a drop of only 6% since medically retiring in Oct 2015. Like you, the drs are monitoring my situation closely, as there are some other things also interfering with stellar health. Like @johnbishop asked, what are your doctors saying for you to do? I follow a low protein diet, and follow a renal diet to help my kidney function keep in a gentle-to-no slide downhill.
Ginger