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DiscussionKidney disease: Figuring out minimal change disease (MCD)
Kidney & Bladder | Last Active: Oct 16, 2021 | Replies (28)Comment receiving replies
Replies to "Hi I read your blog. I was dx with MCD about 15mos ago. I am having..."
@codered032, A quick comment on Prograf - I was taking the Name brand when I first transplanted in 2009. When the generic became available, my transplant team changed me to the generic Tacrolimus. I did not notice any difference in my labs or side effects. I am still taking it.
I am not familiar with Prograf or generic tacrolimus. Hopefully, someone else can comment. I am currently taking prednisone for the second time to treat my MCD. I took a high dose 50-55 mg daily for 6 months before I could begin a very slow taper in June 2020. I enjoyed a 4 month remission before my proteinuria recurred… as it seemingly does with most patients. My nephrologist started out with a “conservative” dose of prednisone in February of 2021. 20-30mg of pred is NOT enough to affect the cells in my kidneys that allow protein loss. Within a couple weeks of going back to 50mg pred per day in early August, the foam in my urine decreased and my weight gain, swollen feet, edema resolved. I personally need the high dose of prednisone to achieve a normal urine Pr/Cr. Now I begin another SLOW taper so I will be on some level of steroids for most of 2021, with a goal of achieving a longer remission. My Nephrologist’s plan is to add either Prograf (tacrolimus) or CellCept (mycophenolate) as a second immunosuppressant to lower my pred dose. I am trying to decide, with input from anyone taking either drug, which would be best.
Not sure this helps you, but I truly believe each patient is different often requiring different treatment regimens. I have immune-mediated disease in my family. I lost a brother to scleroderma and my Mom had rheumatoid arthritis. I think my NS MCD is immune-mediated, so it makes sense to me that it responds to prednisone.
I still plan to seek an appointment with Dr Fervenza at Mayo Clinic. Being on 45 mg of pred in the middle of a pandemic questioning the safety of yet another immunization (3rd booster) doesn’t allow me to schedule that appointment yet.