Discussions that mention prograf

Kidney Disorders board

I am kind of new here. I have been reading post on and off for the last few years. I just don't post myself, but thought I would today.

My son was kind of diagnosed with MPGN unknown type at the age of 12. He is now 16. They have never been able to give us a strong diagnoses as he doesn't quite fit anything. They tell us he is writing his own book. He has had 2 biopsies, both were inconclusive. We have had many different Dr. look at him, they are all confused by him. We have a wonderful Neph that I love. He is so good, so that is a comfort for us.

He is currently on Prograf, Prednisone, Lasix, Magnesium, Cozzar and Atenolol. We have tried other meds but nothing has worked. The prograf was an experiment that has worked well. His protien in a 24 hour was as high at 18,000 but usually stayed around 12,000. For the past year it is at a strong 1200-1400. Still not good but we will take it.

He is tired alot and can't attended school full time and is usually homebound (teachers come to our house). His blood pressures are out of control most of the time. I stress everyday. I can see by ready post most of you understand all this.

Well I just thought I would share. I have been dealing with this for a while and would love to help someone that is just starting this nightmare and would love some feed back for myself.