Update

Hey Guys;

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.

:)

Homeboy,
Ten years on pred, wow, I have been on it for nearly six years, like you, no break. I too would love to come off it but each time I get to 10mg (Im currently on 12.5mg and tapering) I feel like Im dying, all the flare symptoms rage out of control and my AS starts screaming too, so then I up the pred again - viscious circle.
Glad to hear you found a good GI, good luck with your taper and keep us posted, i will especially be interested to see how life is without pred.
Jo