Posted 6/15/2012 12:01 AM (GMT -7)
Another new worry, I cannot get off prednisone. First time on Nov, 2009' 40 to 10 taper over 7 weeks, o
Took in little spurts i think just using left overs, over the next year, them on again summer '10, 40 to .5 taper over 8 weeks. Must have taken it periodically, then back on in April '11 at 20. Went off all steroids including hydrocort and tried Remicade after a 8 mo. Of 6 mp also. Flare increased to worst ever, tons of blood, 20 times a day abdominal spasms, by September . Went to hospital and was put on 60 pred, antibiotics still 6 mp and the Remicade infusion had had 2 at that point. Tapered by nov. while gettin 2 more infusions of remicade. Felt awful, which i think was oral flush that spread, issues from rem and antibiotics,but started to worsen uc so restarted at 20 pred to maintain until surgery. Stayed on 20 till jan ,12, and started to improve once the last dose of rem ended. Slowly slowly tapered and decided to hold off surgery, because I continued to feel much better, thought far from regular stools or remission. also restarted asacol hd, tried probiotics, gas issues I thought, and tried fecal trans when I was at 7.5 pred. Upped hydrocort suppositories at that tim because couldn't retain the fecal, stopped fecal due to retain issues and a vacation, but got down to .1.8 pred. By alternated 2.5, half pills and still felt decent so stopped fully three weeks ago, hoping the asacol was doing the trick. Well low And behold started increased urgency, accidents and diareah with some blood after fully stopping. So had some pred left and restarted at 10 a week, now 7.5and yes it got me back to bearable, once or twice during day, 4-6 from 7pm to 7am and small formed pieces mixed with bloody mucous balls etc.
So now my options are try the fecal again at home, which I am having a hard time started, but summer will be easier with the kids, diet or surgery. Oh yeah , tried scd summer '10 but symptoms returned when pred stopped so I gave up.
Anyway, always had low, good blood pressure, but lately it has been higher, so I am worried about that. Is that permanent, once I stop, also get rapid heart and palpitations too, though, seems worse after eating. Gosh sorry for the long history, but I am so worried and frustrated, hence typing this at three am.,
proctitis 2004, Asa sup., 2006 hydrocort sup. worked for a while when I remembered to use them, 2009 spread to left put on prednisone, asacol, then Apriso. Switched docs tried lialda, rowasa, back to hydro enema and Apriso. 2010 6mp added, 2011 pancolitis ,Remicade, bad flare after no.1,2, pred now, and rem