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Remicade on hold indefinitely for me (it's a good thing).

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Ulcerative Colitis
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Posted 11/12/2007 7:57 PM (GMT 0)
GI just ret. my call and since I am only having 1-3 bm's a day and no D, blood or mucous and my stools are almost fully formed, he wants to hold off on the remicade (unless I begin to flare badly again then up for discussion), which is what I was hoping he would say.  Also, will be going off the hydrocortisone e's and will just be on the prednisone and the azathioprine for my UC.  He thinks the prednisone will be enough for now since I will be on the pred for my kidneys for probably another 4 months or so that should give the azathioprine time to work but to call him if I start to flare again.   

I am a little worried about going off the e's, I think those really helped me but those are not meant to be on continuously, right?

Posted 11/12/2007 8:09 PM (GMT 0)
Hi Beth...sounds like a good plan to stay off the remi considering your symptoms have decreased a lot.

You could taper the enemas...do a second night...then third night..then fourth night..and maybe stay on them once a week.

tapering will tell you if you need them or not.

Worth the try. I wouldn't, however, just go off them cold turkey...

Let us know how it goes.

q
Posted 11/12/2007 8:47 PM (GMT 0)
Quincy, great advice I am absolutely going to do that, I was going to do every other day but I like that formula of adding another day in between each e.

Yes, I am not a cold turkey girl......::remembering my Asacol cold turkey fiasco!::

Thank you!
Posted 11/12/2007 9:29 PM (GMT 0)
Great news Beth!  I hope you continue to feel better!  I'll be sending healing thoughts your way!

Posted 11/13/2007 1:12 AM (GMT 0)
I agree with advice to taper off the enemas. Depending on where your UC inflammation is (was) the worst, the enemas could have been more helpful in reducing bms than other meds. Still advise you to pursue 2nd opinion because of present docs wanting you to stay on Pred for 4 more months! I don't care how much Fosamax these guys put you on-- Pred can injure other organs over time, not just one's bones. I think my own gastro would really go ballistic to hear that they've got you on 60 mgs daily Pred for so long (and would want to help Mitz drive you to that new consultation we recommend!) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 11/13/2007 2:34 PM (GMT 0)
Thank you for all the advice. The prednisone is prescribed for my kidney's not by my GI and b/c my proteins jumped up the Nephrologist is keeping me on the 60/40 alt days, if my proteins went down he would have tapered me. Unfortunately the long prednisone course is the treatment for Minimal Change Disease, there are a couple of other drug options but those are typically prescribed only if the prednisone does not work b/c of the side effects/issues are worse than prednisone (the other drugs can affect fertility), there are just not many options if I want to have my kidney's healed. Also, it is likely that my kidney's will relapse and that I will have to do another course of prednisone, probably a shorter round. The goal w/the pred is to reduce my protein leakage but it has to be tapered very slowly so that I don't relapse, which is why I will have to be on it for so long.
Posted 11/13/2007 3:55 PM (GMT 0)
Right, I got the earlier explanations that you were put on Pred because of the MCD. My thoughts were that since MCD implicates some kind of T-cell function abnormality there would likely be IBD subspecialist gastros with more experience treating UC patients who develop kidney complications than your gastro has. Some of the IBD subspecialist gastros are also immunologists, so have more "cutting-edge" knowledge of cell issues. That kind of focus could be helpful. I'm not just out to get you stuck in a Boston traffic jam-- ! / Old Hat

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