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Flaring; flexible endoscope tomorrow

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Ulcerative Colitis
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Posted 1/7/2013 9:13 PM (GMT 0)
So, things have been getting progressively worse since xmas travel/stress. I'm now having 12+ bms a day with blood present and getting woke up in the middle of the night to go. So this morning, I called my GI and scheduled an office consultation for this afternoon. I just got back from speaking with the man. He said tomorrow I have a flexible scope and then the usual round of tests: blood & stool. He said it is likely I'll go on Prednisone temporarily (not sure the dosage scheme or duration yet) and then stay on the ASA5's (Lialda and Rowasa) for another month and see if I can maintain there. If not, then it's immunosuppressant time, one that starts with a P (should have wrote it down).

What's the typical Pred dosage and duration scheme I should expect? I am 134 pounds and have never been on it before.

I've heard pred is good, it usually kicks in within 3-5 days, is that true?

For extra points does anybody know what the immunosuppressant that starts with a P is?
Posted 1/7/2013 9:21 PM (GMT 0)
The first time I was put on pred it helped after about 2 days. Immensely. The second time not so much. I started at 40mg both times. Duration can very according to the doctor. The quickest most effective way the better.

Feel better. No bonus points for me.
Posted 1/7/2013 9:30 PM (GMT 0)
I am on pred right now for the first time....started at 40 mg/day for 12 days, it did nothing. Upped to 60 mg/day for about 12 days, and it has done nothing. My doc says my UC is steriod refractory and the pred won't help, but that at the very least it may be keeping me from getting worse, so I am still on it, but tapering back down to 40 mg/day for now, while waiting to start Humira. Good luck and I hope the Pred DOES work for you, I have also heard it works well and fast for most people.

The only drug I can think of that has a "P" in it is 6MP.
Posted 1/7/2013 9:51 PM (GMT 0)
The usual starting dose for pred is 40mgs. Did I read that right - they are already planning on cutting back or stopping the 5ASA's in a month or two already? Those are things that you should be taking forever, no matter how good you feel or how long you have been in remission. That's a recipe for failure already if that's their plan. The immunosuppressants are Azathioprine (immuran) or 6MP. Good luck.
Posted 1/7/2013 9:58 PM (GMT 0)
both times i was on pred i started at 40 mgs (i was around 90 lbs). it kicked in immediately after my first dosage (nothing positive of course).

i'm thinking he's talking about 6mp.
Posted 1/8/2013 6:24 AM (GMT 0)
yes, 6MP is Purinethol, so I'd agree that's probably what the doc mentioned.

Hope you improve soon.
q
Posted 1/8/2013 1:18 PM (GMT 0)
Aha, Quincy gets a star next to her name and the bonus points as he called it Purinethol! I wasn't familiar with that name but it sounds like you say it is just another name for 6mp.

Garylouisville, I believe what my GI said we'll start on the pred today and stick with the ASA5's for about one more month. If by the end of that month, I can't maintain with just the ASA5's then it's immunosurpressent time. He didn't' say eliminate the ASA5's. Guess I'll find out today in more detail.
Posted 1/8/2013 2:13 PM (GMT 0)
What is your 5ASA history? Were you on any before the holidays? If so, did they work?
Posted 1/8/2013 2:20 PM (GMT 0)
You could also consider asking if you can give steroid enemas a go before you try oral pred. I'd also start a high-quality probiotic supplement and see if it will help you maintain remission (in combination with the 5ASAs) so you don't have to move on to 6MP.
Posted 1/8/2013 2:40 PM (GMT 0)

fruitgirl said...
You could also consider asking if you can give steroid enemas a go before you try oral pred. I'd also start a high-quality probiotic supplement and see if it will help you maintain remission (in combination with the 5ASAs) so you don't have to move on to 6MP.

I'll ask about something like VSL (it's expensive so maybe my insurance covers it gotta check) and the steroid enemas (although I thought they didn't go very far up the pipe so to speak). I know the last time I was scoped (in Sept 2012) there was some inflammation throughout my sigmoid so it would have to go pretty far...

garylouisville said...
What is your 5ASA history? Were you on any before the holidays?

Before the holidays, I was generally 3 bms or less per day with no signs of blood, and limited to no urgency. Generally, I was in a pretty good place (fondly reminiscing about those days lol). I had days where I went once, other days I skipped a day, 3 was the norm, and the occasional 4 day. I bounced around a lot in the # of bms a bit. My GI said I've never truly been in remission though. I think I had to be close.

I've been on an oral and rectal ASA5 since I was first diagnosed (nearly a year ago). The frequency of the rectals has varied over that time. The GI had me attempt to taper off the rectals over the summer which turned out to be a bad move (things got worse). So then returned to daily rectals and life was good, things improved. I had planned to stay on the daily rectals until this flare up.
Posted 1/8/2013 5:02 PM (GMT 0)
Hi Ipoop,'

For the record, pred is not good! it's got terrible terrible side effects.
try not to stay on it too long if possible.

I think the immunosuppresant you're looking
for is called PENTASA.
Posted 1/8/2013 8:52 PM (GMT 0)
Ugh so that was the most unpleasant flexible-endoscope I've ever had. I had sharp pain and said "ouch" multiple times when my GI moved the scope around the various bends in my intestine. I also had a reflex-reaction due to the pain where I swung my arm around and caught nothing but air. Lol the technician/assistant held my arm down after that little number.

My GI said there is "a lot" of inflammation up there (he went to the top of the sigmoid) and the disease is spreading further (great). At least the good news is tonight I pick up some 40mg tabs of pred and I hope it'll heal things up fast. He said the pred should work within a week and if not call him (I assume he'd up the dose in that case). Sounds like his plan is to put me on 6mp once it heals from the pred. Until then I continue the ASA5's.
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