Long time no post.
I wanted to give an update as I feel I have some good news to share.
I found a gi doctor that I really do trust and this has made all the difference to me. I have been with him for over a year now, I think, or it seems like it. He has been very patient with me. He is also understanding. We have come up with a plan to get me off pred., which I started in August.
So far I have gotten to 11mg every other day. I have been reducing it at about 1mg per month. Was on 15mg every other day. I think I have been on 15mg every other day, or more, for about 10yrs with no break?
The bad news is in just how hard this is. When I reduce pred. I feel really crappy, for a while. I sleep ALOT, I have fatigue. It feels like a chain is strapped to my leg, just getting around is tough. I have bad cramps, food doesn't taste that great, going to the bathroom alot, etc. etc. Once that goes away and my body adjusts to it; I can tolerate myself. Once I do adjust, I really don't feel any worse than I did at a higher dose of pred.
The biggest difference I have noticed in all this is really in my peace of mind. I am not so upset these days. I feel like I am in much better control of my emotions, and I don't have such hardcore mood swings. That part is really wonderful, almost like a dream come true.
My doctor does bloodwork each month, and it has been coming back fine. No active inflammation. My doctor has reassured me that if I get off pred. and my cd flares up, we will go the remicade or humira route, we will not go back with pred.
Keeping fingers crossed.
CD dx @ 13 (1987)
Prednisone 15mg every other day
Imuran 100mg day
Celexa 20mg day
Vitamins + B12 Injections Once Per Week