I found a great site at inspire.com for information about
MCD and FSGS. If I do not respond to the Cellcept they will do another biopsy to see if I have FSGS, the early stages of FSGS look like MCD. MCD is supposed to go into remission within 4 months of treatment, I am at month 10, lucky me.
I am sorry that you have FSGS, from the posts I read at inspire it is a very difficult disease, though I would ask your Nephrologist if you have the end tip type of FSGS, there was some discussion on that and I think if you have the end tip (or I may be using the wrong phrasing) it is the better kind of FSGS, I think there are a few types within that. I am surprised that you are only on 7.5 mg of lisonopril, that did not help me much and that seems like a low dose (to me and all my medical wisdom =) ???
My Nephrologist was the one to contact my GI originally, b/c I wanted to get off Asacol believing that caused my MCD (well sulfasalazine another 5ASA drug) and my Dr's are all part of the Dartmouth Hitchcock Clinic in Nashua, NH, so they all have access to all my records, though my Neph is at a different building they have a Kidney Center w/Dialysis and everything in the building.
Now that you say that your doc's wont talk, it makes me angry, they should talk, my friend is a nurse at Mass General Hospital and where I am going for my second opinion and says that is one thing they are good at there is talking to the other Dr's. Maybe it's b/c they are different practices, but even so, your Doc can better medically explain what is going on, than you, plus it's like playing the telephone game, your GI would get the info second hand from your understanding of what your Dr. said.
Can I ask you about
your pregnancy w/FSGS? Did you know you had FSGS while pregnant? If my MCD never goes away (in a small percentage it does not) I am concerned about
having children, I know I can't be on the drugs while pg or breast feeding but am curious what others do.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs. Do you have edema? If so, check your blood protien level!
Post Edited (Beth75) : 7/15/2008 10:02:16 AM (GMT-6)