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Update, pred time

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Ulcerative Colitis
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Posted 7/9/2013 2:11 PM (GMT 0)
Went to the GI this morning, he scoped me, the dreaded flex sig. No prep, btw. Inflammation is bad and goes up at least 25cm (that's where he stopped, thankfully). The last few years the inflammation has been limited to the rectum, so this is a step backwards.
So, he is putting me on prednisone for the first time. I hoped I would never need it, but here I am. Best case, if the pred works quickly and well, he will take me off it and switch me to Uceris within the first 10 days.

I was afraid this might be the case, so a sad day for me - harsh reality! Hopefully though the pred will work it's magic and I can get out of this flare relatively quickly.
Posted 7/9/2013 2:18 PM (GMT 0)
I took Pred and then Uceris. It did wonders for me. Are you currently on maintenance drugs like Mesalazine (Apriso, Asacol etc) and/or Azathiorpine?

Btw I'm off of the steroids now. I'm maintaining with Azathioprine at the moment.
Posted 7/9/2013 2:20 PM (GMT 0)
Pred is not an EVIL drug if taken over a short amount of time and tapered off so don't worry. Yes, you will get some acne and maybe a fat face. You will not gain weight if you watch your diet. Cut back by 200 or 300 calories a day and you will maintain. If you can manage it, go for a walk at night or a jog.

As for your flare, I hope it works for you! Are you on any rectals?
Posted 7/9/2013 2:34 PM (GMT 0)
I am starting at 40mg/day. I am taking Lialda and will continue with Rowasa at night and Canasa in the day. GI did tell me to stop taking the hydrocort enemas now that I am starting the pred.
I hope I respond well, thanks for the support!
Posted 7/9/2013 3:43 PM (GMT 0)
Good luck. I'd type more but my huge Pred head is just too heavy to hold up any longer. Really though it should help the symptoms. Just taper down slowly.
Posted 7/9/2013 4:04 PM (GMT 0)
Aw sorry to hear that gonk. Pred sucks and even typing it makes me wanna set it on fire. hope you can switch to uceris or that the pred gives you minimal side effects.
Posted 7/9/2013 4:09 PM (GMT 0)

rguyer said...
Pred is not an EVIL drug if taken over a short amount of time and tapered off so don't worry. Yes, you will get some acne and maybe a fat face. You will not gain weight if you watch your diet. Cut back by 200 or 300 calories a day and you will maintain. If you can manage it, go for a walk at night or a jog.

As for your flare, I hope it works for you! Are you on any rectals?



I gained forty lbs in two days eating "nothing my mouth." You forgot about the dreaded water retention.
Posted 7/9/2013 4:41 PM (GMT 0)
It's good you had the scope and know exactly what's going on.

I hope the pred gets you back on track and that you feel better soon.

Will you be getting another look-see in a few months?

Your symptoms match the visual it seems ...was the inflammation to the point of friability (bleeding)?

Looking forward to hearing how you're doing. Your updates are appreciated.
q
Posted 7/10/2013 1:48 AM (GMT 0)
I don't know if its just psychosomatic, but I have had the best day in a long time since taking the pred at 12:30pm today. Whatever, I'll take it. It's a win either way.
Posted 7/10/2013 12:41 PM (GMT 0)
I did really well with pred. The day after I started taking it, my number of daily BMs was cut in half, and by the next day, I was only going once or twice a day. I also started at 40 mg and tapered very quickly until I hit the 10 mg mark. I stayed on 10 mg daily for a while, then dropped to 10 mg every other day, then went completely off. I didn't have much trouble at all during the taper and have been in remission ever since. I also didn't experience any of the nasty side effects.
Posted 7/10/2013 1:49 PM (GMT 0)
it really is a wonderful drug ! I wish everyone could experience it ;-)

glad it's helping and doing it's thing - now get off it soon :-)

Posted 7/10/2013 6:17 PM (GMT 0)
soy....I'll pass. yikes, for I'm highly suspicious that my brain would be in a very bad place. But, maybe a fast taper could be an alternative if I ever had to be on it.

good to hear you're having a better day, Gonk!
q
Posted 7/16/2013 11:01 PM (GMT 0)
I went to the GI today after 8 days on pred 40mg. He gave me two treatment options for this next three week period.

1) Uceris. If it is covered by my insurance I will start the Uceris tomorrow for the three week period until I see him next. He wants me to continue the pred at 40mg until Friday (along with the Uceris), and then stop the pred altogether and continue just with the Uceris, no pred taper needed in this case he says.

2) If the Uceris is not covered, then I am to continue the pred at 40mg for three more days, drop it to 20mg for a week, then 15mg for a week, then 10 for a week, 5 for a week, and finally 5mg every other day for a week.

I'll find out about the Uceris when I go to pick it up tomorrow.
Posted 7/17/2013 12:18 AM (GMT 0)
What are your symptoms now? If you are still having issues I wouldn't drop the pred that quickly (assuming that your insurance will not cover Uceris).
Posted 7/17/2013 12:36 AM (GMT 0)
My symptoms now are limited to some lessened urgency that only occurs when I have to make a real BM - and that's typically been just twice a day this past week on the pred. Today only once. Other than that, I have some blood, mostly I see it on the paper now, no more bowl of blood. No fear of how I'm going to get from point a to point b without crapping myself or how I'm going to make it through this or that. I've got my life back! And really this improvement came on pred day 1.

How do I know if the taper is too fast? What are the symptoms of coming off too quickly? Would you suggest going down to 30 for a week instead of dropping from 40 to 20 in one shot?

I was more worried about the coming off the pred completely after only 3 days on the Uceris. GI maintains that a pred taper is not necessary if you are only on it 10 days or less - but here he has me on it 11 days.
Posted 7/17/2013 1:09 AM (GMT 0)
There are a lot of variables to your situation. You can get off pred that quickly in your case, assuming that that is the right thing to do. If Uceris is approved by your insurance, and it works, you may be home free. If Uceris doesn't work or doesn't work fast enough then getting off the pred that quickly might not be a good thing. There are also some questions about taking two steroids at the same time. Your doctor may be concerned about that. My only advice would be that if you do not take Uceris at all then I would not taper pred that quickly. 10 doctors could give you 10 different taper schedules. It is my opinion that too many doctors taper pred too quickly. If I were your doctor, and you did not take Uceris, I would keep you on the 40mg dose until your colon was completely healed by visual observation and then taper. At that point you could do the fastest taper possible, which could be different depending on how long you were on pred. Hopefully Uceris will work on you and work quickly, in which case none of these variables will come into play.
Posted 7/17/2013 1:24 AM (GMT 0)
I think I have to trust in my GI because, like you said, there are a lot of variables. But what should I be aware of as signs of the taper going too quickly? Is it more emotional signs or physical? Obviously if the UC regresses, I will know that, but as far as getting off the pred, are there signs one is tapering too quickly to look out for? And then what?
I am counting on everything to go swimmingly but want to be prepared in case things go south.
Posted 7/17/2013 1:19 PM (GMT 0)
I was able to get the Uceris this morning, so here goes, down the hatch.
Posted 7/17/2013 4:23 PM (GMT 0)
Let us know how it goes.
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