← Return to Kidney disease: Figuring out minimal change disease (MCD)

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@codered032

Hi I read your blog. I was dx with MCD about 15mos ago. I am having trouble understanding the treatment process. When were you dx, and which medications have worked best for you? I was on high dose prednisone for a year. I was switched to Tacrolimus 4 mos ago. Recently my pharmacist changed my drug manufacturer from Prograf to a generic brand which I have not been able to locate on line. Do you know if the generic work as well as Prograf? How long were you in remission? Any treatment information that you can share will be greatly appreciated.

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Replies to "Hi I read your blog. I was dx with MCD about 15mos ago. I am having..."

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.

@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.