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Kidney disease: Figuring out minimal change disease (MCD)
Kidney & Bladder | Last Active: Oct 16, 2021 | Replies (28)Comment receiving replies
Ginger, thank you for sharing. I have always paid close attention to my health. From the information that I have read, I did have a massive allergic reaction of unknown origin and I was treated with Celebrex for over a year for osteoarthritis. It appears that either one may have contributed to my diagnosis. After a year of being treated with Prednisone, 4month ago I was started on Tacrolimus ($400+ A month)! I am not sure how well it is working because I have to keep reminding my nephrologist to order my blood levels and I am not sure what my levels should be. Thank you for the information. My next appointment is in November. If things have not changed I will certainly explore a visit to Mayo!
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I am a retired veterinarian diagnosed with MCD in January 2020 by renal biopsy. I too lived a healthy 65 years prior to diagnosis. My family has immune-mediated disease and I believe NS MCD has an autoimmune component. After confirmed diagnosis, I took 55mg pred for 4 months and my urine Pr/Cr dropped from 21 to 3. My nephrologist started a slow wean and my numbers went back up so returned to 50mg pred. Finally weaned off pred the end of September 2020. I had 4 months of remission before the foamy urine recurred in Feb 2021. I have tried a conservative dose of pred initially this round, but I am currently seeing swollen ankles and legs so back on 50mg pred daily, atorvastatin for elevated cholesterol, and Lisinopril for hypertension and proteinuria. My panels for underlying disease are normal. As soon as the pred hopefully lowers my urine Pr/Cr this time, my neph and I will decide between starting tacrolimus or mycophenolate, another immunosuppressive drug option in MCD. I need a DEXA scan because of osteoporosis and bone loss associated with long-term steroid use. I plan to get a second opinion with Mayo Clinic in MN. They are a top team regarding glomerular disease and are conducting research to determine underlying cause/pathology/bio markers.
Up to Date is an on/line resource for physicians. I found it researching my Mother’s lymphoma. If you have any friends who are physicians, you may be able to get them to copy the featured Adult Nephrotic Syndrome MCD. Ask your nephrologist about the article. It is such a good reference for me.