Thanks everyone, I have never liked the thought of surgery but the possibility is getting closer. When I see my GI on Thursday for my scope we will talk about
all remaining options including surgery. I know my GI is involved in other clinical trials but I’m not sure if I want to try another one.
Old Hat, my GI and I did talk about
cyclosporine a while ago but I then entered a trial instead. The GI said he would have to first admit me into the hospital before starting it. He said it is more for severe cases to get them under control quickly but he said it may be a possibility for me although he said it isn’t considered a maintenance treatment. I may talk to him about
it again on Thursday. As far as the one good week after my third
open label treatment, I don’t find it to unusual. My symptoms are always up and down, even when I’m not on any treatments. It really makes it difficult to tell if a treatment is working or not. I had good weeks before but it just so happens that the last one was slightly better than most.
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision