Hello I am new to social media so please bear with me while I learn to navigate the internet. I am now 69yo. Approximately 2yrs ago during my annual physical I was dx with minimal change disease. I am a retired RN, but had never heard of MCD. I have always been healthy and other vitamin supplement was on no medications. I immediately started to research MCD but to date not much information related to adult onset. I was evacuated by a neurologist and dx via a rental biopsy. I was treated per protocol with high doses of prednisone and told everything would be ok. Unfortunately after almost a year of prednisone my condition has not changed. The side effects of prednisone were unbearable. Six months ago I was started on Tacrolimus. I question if my condition is being properly managed. I learned through research that I needed to have random Tacrolimus levels done. I became my advocate having to request blood levels and follow-up medical appointments as well as medication adjustments. I am at a lost as to where to go for proper treatment. I am other wise healthy. I am open to suggestions as adult onset MCD has limited internet information. Thank you for any support.

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