Hi Shelley, I have MPGN Type 1. I only found your post through googling to see if I could find others with the same disease. I would love to be in touch. I probably won't continue using this forum, I am part of http://www.kidneypatientguide.org.uk/newBB/index.php
which is a fantastic forum for kidney disease sufferers. So I won't be sticking around here. But I would really like to hear from you. I also have just set up a facebook page: http://www.facebook.com/home.php#!/pages/MCGN-MPGN-Type-1/168835409830710
. If this link doesn't work just look up "MCGN / MPGN Type 1".
You can email me at email@example.com
I have had MPGN Type 1 for 11 years. Kidneys still functioning. Been on MMF and Azathioprine. Also high dose prednisolone four times. It did actually work for me. It didn't bring my protein leak right down, but enough for my docs to think it worthwhile. But its HORRIBLE! They want me back on steroids now for the 5th time but I just can't face it. I don't have Lupus, as far as I'm aware. I presume they've tested thoroughly. It was so long ago that they tested for it I'm thinking maybe I should get them to test again.
Anyway, do get in touch.
Post Edited By Moderator (aimsgirl16) : 2/22/2011 4:59:57 AM (GMT-7)