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Up the medication ladder we go. Uceris users I'd love your feedback

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Ulcerative Colitis
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Posted 7/17/2014 2:17 AM (GMT 0)
So the nurse of my Dr. from the esteemed Johns Hopkins IBD Program finally called me back after THREE days and EIGHT calls to his office, so I am feeling mighty blessed.

The blinding migraines which had me puking my guts out on Sunday, have subsided, now that I am no longer taking Lialda. The nurse says the Dr. would like to put me on Uceris. At our last meeting, he told me that he has seen very limited success with Uceris, and yet he reccommends a four week trial. I asked his nurse what the plan was post-Uceris, and they said, we will wait and see. I will also continue the Rowasa enemas (daily) and the Canasa suppositories (daily).

Here are my questions for you, my fabulous and informed peers:

1. When I asked if I could go on Pentasa, Asacol, or another 5 ASA, he said no and that I would likely have the same reaction. I didnt think to ask about Colazol. Has anyone had bad headaches from Lialda, but been able to tolerate another 5 ASA pill?

2. I have 20 cm of inflammation, is a pill necessary?

3. Please tell me about your experience with Uceris.

Thank you so much for your time!!! I am thankful for you!!!https://www.healingwell.com/community/emoticons/smilewinkgrin.gif

smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin
Posted 7/17/2014 2:27 AM (GMT 0)
I had good luck with uceris and much less side effects than prednisone. I think he is right about the 5asas. If you can't tolerate one, there a good chance you won't tolerate any. You could ask about colazal, May have better luck since it's a bit different. My current situation is not much more then 20cm and in my case, yes, I've needed oral meds. It's very individual. Some people can't tolerate rowasa, hopefully you don't have any problems with that. What's the plan for maintenance since 5asas aren't an option? Terrible for them to wait to call you back... How are your symptoms? Did they mention trying cortifoam or another rectal steroid? That may help you...
Posted 7/17/2014 2:32 AM (GMT 0)
@notsosickly,

Thank you for your reply. I am wondering the same thing- what will I do for maintenance? I am on Rowasa and Canasa, but will that be enough. I am going to ask about Colazol. I wasnt able to speak directly to the Dr. and I wish I could. Is that typical? I am newly diagnosed and this is my second Dr. The first one would actually call me back himself, but he was not a nice person and was not respectful of my opinions and wishes. This Dr has his nurse call me back and she's not able to answer any of my questions. Perhaps I should try to find yet another Dr.
Posted 7/17/2014 2:35 AM (GMT 0)
@notsosickly,

This may sound stupid, but can you please explain to me how can you have 20 cm of inflammation and have pancolitis? Did it use to extend farther and meds brought it down to 20 cm, but still called pancolitis. Forgive my ignorance. Still learning.
Posted 7/17/2014 1:03 PM (GMT 0)
If you're going to try a different 5-ASA, I'd try Apriso, as the dose of mesalamine in it is much lower. There's a chance you won't be able to take it, but that's the one I'd pick.
Posted 7/17/2014 1:17 PM (GMT 0)
I have pancolitis but the current status of things isn't inflamed throughout. Hopefully it doesn't get worse. I have had a flare up of pancolitis in the past. I don't like that your gi was unresponsive. It doesn't hurt to keep your eyes open for another.
Posted 7/17/2014 6:08 PM (GMT 0)
@notsosickly, thx for the info. I hope things get better for you!

@fruit, just called and left a message requesting apriso since my pharmacy can't get uceris for another two days. We will see how long it takes to get back to me!
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