I have been on Remicade for about 2 years with good results, but it has always scared me. It is a realatively new drug, and I wonder about the long term effects. We just don't know what the consequences might be. I am 34 and have 3 small children. I want to be around for them. I don't want to end up with a cancer or another disorder caused by Remicade.
My fear about all of this peaked about 2 months ago when my platelets dropped. This can be a symptom of Lymphoma, and I freaked out! So far things look okay...but I just wonder what will happen if I stay on the drug. My GI could not say for sure if the platelet drop is due to Remicade, but he believes it may be. All of this is enough to make me want to try something else. For now I will stay on Remicade, until I am feeling really good. We will then try to go off of it and add back Asacol, and just see how it goes. I am not any immunosuppressants. I have tried them but had severe nausea and vommiting with them.
I hear you loud & clear- I have a 5 1/2 yr. old daughter, & I can't stand to think of myself not being around for her. My labs have always been good, but if they do ever show low platelets I don't know what I'd do. I'm terrified of going off Remicade, really. I suppose I'd muddle thru with whatever meds helped, & if nothing did I'd pursue surgery. Have you thought about surgery? No meds, no special diets, no colon cancer/lymphoma fears..... Jeez, I'm starting to convince myself! Well good luck with the new GI & diet- definitely keep us posted!