Adult, Minimal Change Disease

For many years, I worked as a Nursing Supervisor at Children’s Hospital in Boston. I saw many children with Nephrotic Syndrome – Minimal Change Disease. Back then, they were treated as very sick children that were hospitalized for long periods, and some even died. In time, treatment with steroids was refined and eventually hospitalization became a rare thing.

You can’t imagine my surprise when I was told in 2005 that my kidney biopsy showed Minimal Change Disease. I was 70 years old and had just purchased a home in Florida!

We made the move to Florida and  I was started on 60 mg of Prednisone with a good response, but when we tried tapering it, all the symptoms returned. I went back on 60 mg again and developed steroid-induced diabetes, cataracts, osteoporosis, and stomach ulcers with Cytomegalovirus.

I became so sick from the side effects of the steroids that my nephrologist started tapering me as quickly as possible, causing me to develop secondary adrenal insufficiency. Because of that, I still have to take steroids, which I hate! I was on Cyclosporine for two years, but that stopped working, so I went to Cellcept.

My medications are constantly being adjusted in hopes of controlling my blood pressure, cholesterol, and the progression of my disease with the least amount of side effects.

My life is complicated by the fact that my husband has advanced Alzheimer’s disease and I am his caregiver. I am tired all the time. I would give anything to have some of my old energy back. I would love to be in contact with other older adults who have this pediatric disease.