Hey there. I just wanted to say hello to the members of Adults with FSGS. I have been reading some of your discussions and so many things run through my mind when I read them.
I was diagnosed with FSGS in 2004. Initially my diagnosis was Nephrotic Syndrome, then I had a biopsy that showed I had the more aggressive form of FSGS (collapsing variant). To make a long story short, I started 120 mgs of Prednisone every other day. Because I was on Prednisone I had to take other drugs to help me with my stomach, my swelling, my blood pressure etc. This amounted to 13 pills a day. I was hyper all the time, had swollen ankles, moon face, thinning hair, (depression) and when I was weaning off of them I developed deep red scarring in my upper arms. I tried Cellcept next with less side effects, but no positive results as far as protein leakage. Next my option would be cyclosporin and after reading about long time side effects (I was developed a hatred for drugs due to Prednisone) I choose not to do cyclosporin.
At this point I decided to work out 6 days a week and improve my diet. I lost 35 lbs and it made all the difference in the world for me. I have been in what my doctor called a stable state, with a creatinine of 2.0 for 8 years now. Today my daily regimen of medication includes lisinopril with HCTZ, Vitamin D ( I have high parathyroid levels associated with FSGS) iron supplements, and Lipitor 20.
What I wanted to state is this. FSGS is different in everyone. My experience is not someone else's and vice versa. But doctors tend to treat all of us (FSGS patients) the same. We are given drugs with the hopes that they help and when one doesnt work, we get given another one until something works. I'm a firm believer that you are your best doctor as long as your honest with your symptoms and/or feelings. My nephologist calls me his "most defiant patient" yet for someone with the collapsing variant of FSGS, I have also been his most successful. Reading and education yourself about the disease and the medications allows you to take charge and make decisions about your healthcare that you feel comfortable being a part of.
If I can help anyone who suffers with FSGS like myself or you just want to chat, then great. Its nice to meet you all.