Posted 1/29/2011 10:25 AM (GMT -6)
Specifically, at the last visit, he wanted me to start talking to me about other options- and thanks to this forum I was already well-aware :)- I told him I wanted more time to try diet, Rowasa, etc.- he was fine giving me another 6 weeks since I haven't been getting worse- and he wants to either up the Prednisone more, put me on Remicade, and/or 6mp at the next visit. As it stands I'm certainly able to deal with the symptoms and it isn't negatively affecting my life- I can go to work, do family activities, etc. He had no opinion on the dependence issue; he actually referred to me as being steroid refractory as it I'm not getting better (though he feels I'd be worse if I was not on it to begin with).
#1, I want to avoid becoming dependent on the Pred, and I'm worried the longer I'm on it the greater the chances are (though I certainly don't know that for a fact). Maybe I already am, who knows. I have had zero side effects yet, but it's been 2 months on 20mg and 2 months on 40mg (4 months total) so I'm worried I'm getting close. (Sidebar- does the fact that it's not giving me a better/quicker benefit coincide with the lack of side effects?)
I'm not happy that I'm at the point of considering Remicade or 6mp, though I'm at that point more because I'm worried about #1 above then I am about getting better quicker. And maybe that's the wrong way to be thinking about things.
I generally have multiple BMs in the morning (1-hour timeframe), and then multiple in the evenings (2-3-hour timeframe). Before the Rowasa, the blood would be heavier with the first few, then taper off. With the Rowasa, it's almost the opposite. So its probably doing good for the lower half and less for the transverse and ascending (and I've got inflammation throughout).
I have mentally dismissed upping the Pred to 60mg in favor of Remi/6mp... I would love nothing more than for the Rowasa to get me better, so I don't have to go that route at all. But if I do, is upping to 60mg an option? Doc said returns are diminishing making the jump from 40 to 60, I'm just afraid of the dependence.
Thanks for listening :)
UC October 2010
20mg Pred, 3600mg Asacol
Psyllium, fish oil, random probiotics, sunflower seeds and spinach!