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Prednisone taper - my body adjusting with temporary symptoms or do I need to increase dosage?

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Ulcerative Colitis
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Posted 7/16/2017 10:25 PM (GMT 0)
Hello!

After my recent diagnosis and first bad flare (including very bad IBD-related arthritis) I was put on 40mg prednisone for two weeks and told to taper 10mg every week thereafter. I'm now at the point where I dropped to 10mg 3 days ago. For the last day or so on 20mg and for these past 3 days on 10mg I have been having some minor symptoms. A few days ago I had a little bloody/mucos-y blob (gross, I know, sorry), but haven't had any more blood since then. Yesterday I passed a little mucas, some minor joint pain, mild stomach tenderness, very mild cramping, and general blah-ness (I'm sure you know what that's like).

I've been on Imuran for only 2 weeks (not long enough for that to start working yet) and I'll be starting Remicade in two weeks. Doc's waiting to start it until after I get back from a cross-country trip for my 20 year high school reunion, which I leave for in five days. Around that time I'm also supposed to be tapering to 5mg.

I've been reading that if symptoms return on a pred taper, standard practice is to increase your pred back to where you were when you didn't have any symptoms, which for me would be 20. At least until I start the Remicade and it has a chance to work. Is it possible that the symptoms I'm having could be temporary (my body trying to adjust) and it will work itself out or should I go ahead and go back up to 20mg to avoid things getting worse? I don't want to get sick at my reunion (especially since I have to fly 5 hours) but I also don't want to jump the gun and increase my pred if my body is just adjusting. Should I wait to see if I get more severe symptoms (bloody diarrhea) before I increase the pred or assume that since I'm not on another drug yet to control the UC yet there's no way the pred could work on it's own and I should try to avoid the inevitable symptom return by increasing the pred back to 20mg until I get the Remicade underway?

I'll ask my doctor as well, but I wanted to hear your experience/advice. Thanks so much. smile

Post Edited (ilovedogs) : 7/17/2017 8:26:00 AM (GMT-6)

Posted 7/17/2017 2:47 AM (GMT 0)
My opinion only, but if you're going on a trip you do NOT want to flare, so I'd increase the pred. AFTER checking with my doctor, of course. I don't think symptoms increase because of a pred taper, but because the pred is keeping symptoms at bay and a lower dosage isn't enough to do so. I'd keep it at a manageable level until the remicade gets going, and then decrease.
Posted 7/17/2017 12:21 PM (GMT 0)
if you are not having significant side effects, go back to the 20 and have a great time at your reunion -
Posted 7/17/2017 12:44 PM (GMT 0)
If you start seeing your UC flare symptoms return as you lower your dosage then that's a huge red flag waving right there (or like the arms-flailing danger, danger Will Robinson robot from the famed Lost in Space series). If your symptoms start returning during a taper you should go back to your last safe dosage of pred when symptoms did not occur, and call your gasteroenteroligist for further instruction. Don't worry about a single bad day (as we all have those and it's normal), but make sure it is a consistent worsening of your symptoms related to a pred taper. If you march blindly forward with a pred taper than the flare will return with a vengeance as you continue your taper. Absolutely nobody likes pred, but it has a purpose and is very good at holding our flare at-bay until our other UC medications have been given ample time to work. And the best use of prednisone is to have a variable taper that is based on actual patient symptoms and response, rather than a rigid schedule.

You are 2 weeks on Imuran and still awaiting your first remicade infusion, so I would consider holding at 20mgs of prednisone until both medications have been given time to work. I'd give Remicade a month to work before going any lower on the prednisone than 20mgs. By then the imuran should have an affect, as should the remicade. Hit this flare with a one-two knockout punch and then lower the pred when it is no longer needed.
Posted 7/17/2017 2:20 PM (GMT 0)
Thank you so much for taking the time to read my situation and sharing your thoughts about it with me, FlowersGal, TroubledTurds, and iPoop. It is so wonderful that there are people like you out there willing to help and shed some light for a newbie to this confusing and sometimes overwhelming world of UC. Thank you so much.
Posted 7/18/2017 3:59 AM (GMT 0)
Good luck and have fun on your trip. Let us know how you are getting on!
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