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← Return to Fibrillary glomerulonephritis
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Kidney & Bladder | Last Active: Aug 21, 2023 | Replies (76)
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So I go Feb 14 to my nephrologist here in Idaho the 14 of February. I don't know what she's going to do. But when she told me she said as of now there's no treatment available. The Mayo clinic told me to get a bone marrow biopsy. Can't do that til the appointment with my doctor. So I'm searching to see if there are any clinical trials research out there for my disease. I also was told it's very rare
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I have been on your same journey since Oct 2017 and just found out Friday I am now eligible for transplant evaluation.
I visited Mayo Rochester in Apr 2019 and was also told there is no cure and very rare.
I have had 4 Rituxin treatments and felt so much better until they no longer seemed to help.
I have figured out (after repeatedly asking for diet information and not receiving any) that diet is a big factor in feeling better. I met with a dialysis nurse/dietician who was of great help and gave me info on what NOT to eat.
I wish you all the very best on this journey!