Cassie B.

Adult, Minimal Change Disease

I was diagnosed with Minimal Change Disease about two years ago. I was hospitalized for 5-7 days and given Albumin, Lasix and Prednisone intravenously; then I was given oral Prednisone (80mg) to take home for about four months. All I remember from the 80mg was being VERY irritable, so my doctor at the time said I could go down to 60mg. I then tapered off of it after that, which took about 4-5 months.

I was okay for about a month after I had completely tapered off, but I then relapsed again. I was put on Prednisone again, and around January/February of 2017 I was almost through tapering down to around 20mg of Prednisone, but I had signs of a relapse so I went back up to 60mg. I have been on Prednisone ever since. I was tapering down from 60mg when, again, I showed signs of relapsing, so now I am at 40mg and my doctor has ordered urine and blood tests to confirm whether I should start taking Cyclophosphamide in conjunction with the Prednisone.

Doing research on this drug was scary because I was told and have read that it is a chemotherapy drug. That’s slightly scary, but I don’t think there is much else I can do in my case. I know I cannot be on Prednisone for too long, so maybe adding this other drug in the mix will put me in remission faster than if I just stay on Prednisone. Two wrongs may make a right in this case. Something like that, anyway.