Thank you everyone, I really appreciate your comments, empathy is a great thing, knowing you are not alone (though I wish no one else would ever have to go through this).
I did start the imuran last week and did my weekly blood test this am. Is it better to take Imuran at night? I have been taking it in the am w/my prednisone.
I have my PPD test pending for Remicade Nov 5th and I am getting better so I hope maybe I will be okay enough not to have to go on the remicade. I think going cold turkey off the 5ASA's is what threw my into this tailspin flare...I had been on it for 7 years straight.
The pred is helping my kidneys and went from losing 4.7grams of protein a day to 3.2 grams a day, so the little 'feet' are reconnecting themselves in my kidneys = ) and helping me not to lose as much protein. I still have edema and since I have stopped working out (just too tired/flare) it does not go down as much, I think that may be b/c of the pred?? Next kidney appt is Nov 9th so hopefully I will have more good news to report then.
Couple of things I have learned in retrospect, I should not have gone cold turkey off of the 5ASA's. I should have tapered. And I think the pred may be helping my UC so I will keep my kidney doc and GI working together b/c I don't want to go into a worse flare tapering the pred. I am doing 60 one day 40 the next and so on. I am not crying as much anymore, I think b/c I am not going to the bathroom around the clock and do see some kind of light at the end of the tunnel and am handling it better.
thanks everyone, I really do appreciate it!!!!
UC Diagnosed March 2000
Imuran 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;
Lialda 2.4mg 1xday since 8/24/07 ; prev. Asacol 4800mg day
Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.