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Going on Holiday on the 29th and i feel awful.

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Ulcerative Colitis
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Posted 8/16/2018 1:08 AM (GMT 0)
I have been on pred now for too long, about 18 months. I here so many horror stories and want to get off this drug so bad. I have tried to taper down several times but with no success, In my last attempt I have been reducing by 1mg a week or for the last few months and got down to 3mg, but did not feel I was fully in control of my UC. I stayed at 3mg for about 3 weeks until last week when I got dramatically worse and starting flaring. I’ve been on 10mg for the last week now and things have gotten a little bit better, but I do not feel I can sit on a plane for hours or really go out and enjoy myself without worrying about where the nearest toilet is. I think I’m going to have to go back up to 20-30mg so I can enjoy myself, but this feels like a huge step backwards.

I am currently also taking 200mg of azathioprine daily (1year) and Humira every other week(6 months), my next appointment with my gastroenterologistis in October and just feel I need to try something else.
Posted 8/16/2018 1:58 AM (GMT 0)
I am sorry you're not feeling well.

When is the last time you saw your GI?
Did you ever get the antibody test for humira or the levels checked for your aza?

It sounds like whatever you're doing isn't going to get you where you need to be to get off prednisone unfortunately. It may be the best case that you go up and try to enjoy your trip, but you do need to be honest with yourself, how long are you willing to take prednisone to maintain some semblance of normalcy? There comes a point where you aren't willing to damage your body, and you do whatever's necessary to get your health back.

Can you get your GI to see you this week as emergency? Maybe you can get some stool tests and get the levels checked, then you can potentially make some adjustments before your trip... it's also possible you could try something like cyclosporine to get you out of the flare up, but you do need monitoring while doing that, so I don't know how it would work with traveling. I personally wouldn't be able to travel with a flare up like that. I wouldn't enjoy myself. When was your last scope?
Posted 8/16/2018 11:35 PM (GMT 0)
Ditto antibody and concentration test of humira. What's your dosing, can it be increased to weekly? Did humira ever improve things at all, even initially?

You can try adding back mesalamines both oral and rectal. If that doesn't work then I'd consider xeljanz (fast working) or entyvio (slow working). Time to shake things up, try something new, and kick the pred for good!
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