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Prednisone taper, increased symptoms

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Ulcerative Colitis
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Posted 3/14/2019 5:29 PM (GMT -5)
Hi friends,

I had a colonoscopy at the end of January which showed moderate patchy inflammation in the sigmoid and ascending colon (strange I know that it was patchy, but she still seems to think it's ulcerative colitis and not crohn's). So she put me on 40mg of prednisone in addition to my usual 3600mg of 5ASA/ day. Told me I didn't need to use rectal meds anymore because of where the inflammation is. She said if symptoms came back as I taper off the prednisone that she would put me on something stronger (Imuran I think). So after 2 weeks of 40mg, I taper 5mg/week. At 30mg, I started seeing symptoms pop up again, but I kept tapering for another week to see if it would change. At 25mg, I call my GI doctor but she didn't call be back. Called her again at 20mg, and I find out she's gone for the week. I'm supposed to wean down to 15mg tomorrow, but I'm not sure if I should. I only have exact amount of meds for a 5mg/week taper and my GI seems to be near impossible to contact. Not sure whether it would make things worse than they are now or just not get better.

My symptoms are blood, mucus, loose bowel movements, abdominal pain (especially during/after BM), urgency in the morning especially, and I'm going 2-5x/day. All in all symptoms are pretty much back to what they were before the colonoscopy when I had moderate inflammation.

I'd like to get a new GI, but it took me 6 months or more to get in to see this one so that's a long term solution. For now, I want to know should I stick to my prescribed taper? I'm going away next week on vacation so it would be nice to not get even worse..
Posted 3/14/2019 6:00 PM (GMT -5)
Doesn't she have someone covering for her while she's out? Where are you located? You shouldn't have to wait for a medication question like this.

You probably will need to go back up and taper down all over again. Do you have a primary care doc who can at least give you a script for more pred so you can go back up and taper down slower until you can get on a new med through your GI. Imuran can take a few months to kick in so you should likely start that while you are on pred so the pred can keep you stable until Imuran can kick in.

You shouldn't have to suffer because your doc is out of the office. Docs usually have someone cover for them when they can't there. 6 months us too long for an appointment. Hopefully you can find a doc who is more accessible.
Posted 3/14/2019 6:02 PM (GMT -5)
Also, if you have any rectal meds left it would be a good idea to get back on them. Enemas can reach at least part of the sigmoid so they will help
Posted 3/14/2019 7:15 PM (GMT -5)
Thanks for your reply!

I'm in Canada (just outside of Toronto). Specialists are hard to come by here - at least in my experience. No one is covering for my GI. Her voicemail actually says "Only leave one message. If you leave more than one then you'll be the last one called back". Very caring, right?

I tried my family physician but he's away this week too (it's March break here so apparently everyone is on vacation). I could see him in a week and a half when I get back though..

I do have some enemas that I could take.. I was so relieved when I was told to stop using them because I hate them but I guess if they might help it's worth it. Do you think I should stay at 20mg of pred? Continue the taper to 15? Would it even make a difference if I'm ultimately going to have to go back to 40mg if I start Imuran? Is it bad to be going up and down on pred or better to stay at a particular dose?
Posted 3/15/2019 3:14 AM (GMT -5)
I would stay at 20mg for now unless you want to deal with worse symptoms until you can see a GI. Also your GI sounds horrible!!! People skills are an important component of being a good doctor too! And colitis is an illness which does need urgent treatment during flares, therefore you do need a GI practice where you can still see somebody when your regular doc is unavailable.
Posted 3/15/2019 4:06 AM (GMT -5)
I agree with poopydoop.

Toronto is a big city. Surely there are a lot of GI's there and hopefully you will find one that specializes in iBD and has back-up for when they aren't available. It's just horrible to expect patients to suffer until the doc gets back from vacation!
Posted 3/15/2019 8:33 AM (GMT -5)
Do NOT blindly continue a prednisone taper when your flare symptoms are reappearing! That's a waste of your time and your doctor's time, as you'll just go back into a full-blown-flare by continuing.

Do go back to your last safe dosage on prednsione, and stay there until your doctor adjusts your maintenance meds. I'd max out the mesalamines, 4,800mgs a day of oral mesalamine and a 4,000mg a day mesalamine retention-enema. If that is not enough then you likely need the imuran.
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