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The dreaded pred taper!

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Ulcerative Colitis
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Posted 1/25/2016 4:54 PM (GMT 0)
So been on a course of pred for few weeks now after stubborn flare not responding to enemas.
Started off at 40g for 7 days, then down to 30g for 7 days then 20g for 4 weeks, then 15,10 and 5 for 7 days each.
All fine, massive improvement until the last few days where bleeding has come back a bit. I am just starting out on the month of 20g. I rang the ibd nurse. She said stick with it and they will get another flex sig arranged. But surely it's only going to get worse? I prob have enough pred to go back a step and try taper down again albeit a shorter one.
Or may the bleeding calm down if i stick with my 4 weeks at same dose?
Thanks
Posted 1/25/2016 8:13 PM (GMT 0)
Prednisone is a good rescue medication that buys you time until your other uc maintenance medications have time to kick in. Prednisone is a temporary medication. If your symptoms return as you taper, off of prednisone that's a big waving red flag to stop tapering, stay at your current dose, and call your gastroenterologist (which you did).

A return of symptoms likely means your maintenance medications aren't sufficient. It can mean you're tapering too fast, as well, in some instances.

What are your other uc medications and doses?
Posted 1/25/2016 8:29 PM (GMT 0)
Currently on max dose of mesalamine and I have another week of mesalamine enemas left.
40mg and 30mg were fine on the pred. It's now I have dropped to 30mg the bleeding has returned. I am supposed to stay on 20mg for 4 weeks now but not sure there is any point if it's not working at its current level.
I could in theory go back up a bit and taper by a smaller amount but they won't give me anymore pred or enemas without doing another flex sig and that won't be for a few weeks yet so don't want to be left without any working meds.
I thought they would give me more pred to do a longer slower taper but they won't so I will have to work with what I have. The nurse said try not worry about a bit of blood but i know it's the start of things!
Is it possible as I am on a long dose of 20mg that it will kick in a bit?
Posted 1/25/2016 10:48 PM (GMT 0)
it's not necessarily the start - blood is the last symptom to go for many - the pred makes it go away, but given time, it may go away on it's own - but you have to give your body that time to know for sure -

if it was me, I'd stick with the plan and if you see other symptoms show up, then it may be time to do something different -
Posted 1/25/2016 11:40 PM (GMT 0)
If you've maxed out the mesalamine and are still experiencing symptoms at 20mgs of prednisone, then you might ask your gastroenterologist about immunomodulators (Imuran, 6mp, or aza).
Posted 1/26/2016 6:18 AM (GMT 0)
They won't go down that route without another flex sig. I only had one 8 months ago which showed mild inflammation on the left side. So maybe something has changed since then but will have to wait for an apt thru.
I think i might ask for more enema as 3rd day of using what I have left and today has started off well. No blood. Fingers crossed
Posted 1/31/2016 7:23 AM (GMT 0)
Salofalk foam enemas might help but you should be allowed to taper slowly! I had to halt tapering during a flare and it is better than going back up to 40mg again. You may not be getting the best advice - I would get a little more feisty and say that you want to hold to the dose a little longer, while looking at better maintenance. I avoided azathioprine two years ago and regret it due to horrendous flare for the last 4 months. I have been in hospital and off work for nearly three months - it isn't worth risking a bad flare! I always fare after a flex sig and if you've had one recently, then is it strictly necessary if you can report the symptoms.

Just a few thoughts? Good luck Cx
Posted 1/31/2016 9:27 AM (GMT 0)
Thanks. Having a bit of a nightmare with this now. I put myself back up to 30mg of pred as still bleeding and urgency. I am now 5 days into 30mg and there is just no let up. Things aren't awful but still some blood and fair bit of mucus. By staying at 30mg for longer it now means I have less pred to taper with now which is not helpful.
Will be back on the phone tomorrow looks like!
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