tums - I understand your concerns. My doc was recommending azathioprene for me several months after I was diagnosed. After talking to his nurse about it, I did some research and decided against it due to the side effects. My little sister had skin cancer before she was 30 and I had precancerous cells in a mole that was removed over 10 years ago, not to mention that cancer seems to run in my family. Because of my history and my family history I declined to go on it and argued w/ my doc about it that there had to be something else. His concern was the time that I was spending on pred and he was afraid that I was steroid dependent (It took me 7 months to get off it which I know isn't good).
He ended up prescribing xifaxin which helped get me over the 20-15mg drop and on down through 10mg before stopping it. Like many others, I watched everything I put in my mouth and didn't take a chance with anything that had a chance of bothering me even when I felt great. I also had discovered that overdoing it caused me more problems than anything I ate so I made sure I got as much sleep as possible and took lots of naps on the weekends. I've been off pred for 1 month now and while I had blood and a few worries after a long and busy weekend, I've gone back to keeping an eye on everything I eat and not overdoing it and things have cleared up tremendously. I finally felt good enough to start trying things and added in metamucil last week which has solidified my bm's even more.
I think my fear of the side effects of azathioprene and remicade (not to mention my extreme fear of needles) made me willing to do whatever it took to get off the prednisone without having to go on anything else if at all possible. I was lucky enough that changing my diet and my ways worked for me (at least for now). As a person that used to stress over anything and everything, I have learned to just let things go that I have no control over. It's really amazing how much it has helped me. Right now there are a lot of stressors in my life, but I've learned that there's a lot of things in life that we have no control over and stressing over them doesn't change things (other than to make me flare) so I just have to let them go.
I wish you luck in making the decision that is right for you. As with many of the drugs that UCers and others take, there are positives and negatives to them and you have to make the decision that is right for you. While there may be a higher chance of cancer with the anti-rejection meds, if you can't control your UC without them there's also a good chance of getting colon cancer and losing quality of life. I know that there are many people on this board who can testify that the loss of quality of life that can occur makes it worth trying many different things to get the best quality of life possible so that you can enjoy life with your loved ones.
Ducridr - 34 - female
Diagnosed w/ severe pancolitis 11/20/2007
Asacol - 6 (400mg) 2x/day,
Xifaxin 2 (200mg) 2x/day, Prednisone 5mg (started at 40mg Nov 07) off end of June 08, multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day)