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To Remicade or not?

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Ulcerative Colitis
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Posted 7/27/2017 1:55 PM (GMT 0)
Hello diagnosed with UC in June started Lialda and Apriso which come to find out I'm allergic or my body rejected it which caused my symptoms to got worse. Lost 20lbs and hospitalized for a week. Left hospital with Cipro and Flagyl and 40mg of pred.

Feeling almost normal now and eating. Bathroom maybe 5 times still loose but better than 20-30 with blood. Starting to taper off pred 5mg at a time.

Doctor ordered Remicade and awaiting approval. Should I try the taper off pred first to see what happens?

Or just start the Remicade?
Posted 7/27/2017 2:20 PM (GMT 0)
Tapering off pred without any type of medication to maintain, would likely put you back at square one with 20-30 BMs a day. I'd definitely figure something out before tapering, especially since it already sounds like you're having symptoms while on prednisone. If remicade isn't for you, there are other options.
Posted 7/27/2017 2:46 PM (GMT 0)
Only side effects from prednisone is the lack of sleep and feeling fatigued. Maybe get 4-5 hours sleep. Not gaining any of my weight back either which I thought pred would help with that but seems to be opposite. No moon face or acne.
Posted 7/27/2017 2:51 PM (GMT 0)
How long have you been on pred? I didn't get side effects until after I was on it for quite a while.
Posted 7/27/2017 3:09 PM (GMT 0)
40mg of pred since July 8th. Starting to taper to 35 on Monday. Doctor wanted me to stay at 40mg for 3 weeks.
Posted 7/27/2017 3:45 PM (GMT 0)
I'd go on the remicade as you sound like a severe case with 20-30 bms a day. It's the only UC medication to put my UC into a remission and I have yet to experience a side effect from remi.
Posted 7/27/2017 4:01 PM (GMT 0)
40mg for a few weeks and still going 5x? I agree with your GI, get on something. A few weeks, while not usually long enough to suffer too many noticeable side effects, is often long enough to have UC symptoms 100% managed. Some people it takes longer, or higher doses, but for me, 40mg always nipped it quickly.
Posted 7/28/2017 4:54 PM (GMT 0)
I wouldn't taper prednisone prior to remicade. Prednisone is a bridge to successful maintenance med. IMHO, wait until you have had the loading doses of remicade and see if you get good results. Everyone is different but I had immediate results.
Posted 7/29/2017 6:01 PM (GMT 0)
You don't want to taper prednisone until your maintenance medication (whatever that may be) is fully working. I just had my second infusion of Remicade this past week and my doc and I aren't even talking about tapering yet. Which is good, because Remicade hasn't really kicked in yet.
Posted 7/31/2017 12:23 PM (GMT 0)
Thank you. First infusion Tuesday.
Posted 7/31/2017 12:37 PM (GMT 0)
Good luck! I think if it may work, give it a shot. I think I was on pred h too my first few Remicade doses to use as a bridge, like others have said.
Posted 7/31/2017 3:12 PM (GMT 0)
Good luck!

The infusion process is 2.5-3 hours long, and quite boring where you just sit in a chair for the whole time. so bring entertainment: a book, tablet, a fully-charged phone, or other form of entertainment while you wait.

Premeds of Tylenol and your choice of antihistamine (benadryl or claritin, typically) are common. Benadryl will knock you out, and you'll have a nice nap. Claritin is non-drowsy, and therefore I always ask for it!
Posted 7/31/2017 3:32 PM (GMT 0)
Remicade will not work immediately but however, my doctor has said to me patients who try the first dose and feel a 100 percent normal but slowly decline because your in a flare, they usually have the highest success rate. She said it takes its toll by the 5th treatment for it to work for you or not. I have gotten Remicade 3 times and everytime I get it I always use the bathroom a little less. Being in a bad flare is where in lies the problem. Plus the first time I got it, the 2 weeks after that I was completely normal. It doesn't hurt to give it a try, it helps very well with back pain as well.
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