I am new here and was just diagnosed w/Minimal Change Disease on 9/6/07.
The Nephrologist can't say for certain what caused it but I believe I know what did.
In March 2000 I was dx'd with ulcerative colitis and since then have been on drugs that contain mesalamine until 2 days ago. Within a year of begining those drugs I began to have edema (at 24 years old) symptom of MCD and went to the dr's several times, the range of answers was, "it's your shoes" to checking my uterus for cysts.....all ok. Doc's and I could find no answers.
Well my gastroenterologist found hematuria in my urine and sent me for a urinalysis about a month ago, they found proteinuria 4.7grams a day and sent me for a biopsy 8/29. I researched kidney diseases and out of all of them prayed for nothing but if I did have one, MCD seemed like the best prognosis and I found out on 9/6 that I have MCD. I don't think my Nephrologist ever had anyone be excited to have MCD but I was scared of FSGS or worse (still can't 100% rule out FSGS, but my biopsy just showed MCD).
I then researched all my meds and found out the mesalamine if you are 'hypersensitive' to it can cause MCD. So that is why I believe I know what caused it.
I called my GI and we have been playing phone tag. Anyhow the mesalamine for my colitis is for mild/moderate colitis and the prednisone the Nephrologist prescribed is also prescribed for really bad colitis. I made an executive decision as president and owner of Beth, Inc. (me) to stop taking my mesalamine drugs and just take the prednisone for now. If it can cause it , I've been taking it, and I have it, that's all I need to know, plus I don't want the drugs to counteract eachother in my kidneys and have to be on prednisone for longer.
I am on 60mg of prednisone a day, started yesterday for 1-2 mos then will taper 4-5 mos, also Diovan 80mg a day, Simvastatin 20mg a day, Fosomax 70mg 1xweek, Calcium 500mg w/Vit D 2xday. I have normal blood pressure and am not a diabetic, also my bun and creatine levels are fine. I do have high cholesterol, could be from the MCD, though high cholesterol also runs in my family (maternal)
Neph says I have a 70% chance of achieving remission if not will need another round of predisone (hopefully shorter round) and if neither work then have a bigger problem.
I am hoping to find others out there who have MCD and anyone that can offer opinions and advice.
I was scared out of my mind, you hear kidney disease and google it and it says, transplant, dialysis, ESRD, etc.