Experience tapering pred

Curious (and probably just mining reasons to be not-pessimistic, if im being honest)

I’ve been feeling really well, and my doctor started me on a 5mg/week prednisone taper after my second Remicade infusion.

40mg to 35mg gave me one bad day on the second full day of reduced dose. Tired, cranky, some cramping. But things bounced back.
35mg to 30mg gave me a similar second full day of reduced dose, but today (third day) I had a lot of blood compared to the occasional small amounts I have had through the entire time on pred. Yesterday seemed to be a “clean out” day, tho, so I’m trying not to worry about it too much. I feel pretty good otherwise.

Has anyone else had little hiccups that correct on the taper? I’m trying not to worry that my hiccups are actually a return of flare symptoms. And even if they are, I haven’t even had my third induction dose of Remicade yet, so I know it’s too early to write that off even if I can’t quite get off the prednisone.

This is the longest I’ve been on 40mg: 4 weeks, so this is just a different taper than I’m used to. Not sure what is “normal.”

Thanks iPoop — It’s good to hear that maybe a bit of symptom worsening isn’t the end of the world (as long as it bounces back).

I’m not sure if the cranky/tired is withdrawal, so much as my typical lack of tolerance of pred. I do not handle it well at all, usually, tho I’ve done really well with it this time around. I think it’s just the initial change, and/or the way my body processes it. I have to split my doses or else life is a total nightmare 12 hours after a full dose. I couldn’t even handle a steroid inhaler for my asthma. Me and steroids just don’t get along.

While I am sorry to hear that your symptoms kicked up with a dosage drop, because that sucks, I am also heartened. Thanks!

I kind of figured I still feel way too good for it to be a catastrophic issue, but it’s been so long and I have so, so enjoyed feeling almost-normal, the anxiety surprised me.

I've had very small setbacks on the first day of a taper, but never a return of blood or "a lot of blood," which I would not call a small setback. Sorry.

Oh ok. I have no idea. For me, blood isn't normal. I hope the Remicade starts really kicking in for you!

I had my first positive sign 1-week after my second infusion (at week 3). I had a much bigger improvement 1-week after my third infusion (at week 7). I was off of pred at 8-weeks into remicade. I had slow, steady improvement thereafter until I achieved a remission.

It was small improvements and baby-steps for me. First week, I'd go 4-5 times a day on average. By the end of week three, I was seeing a lot more 3-4's and they started to look a bit more firm, and a bit less urgency. By the end of week 7, things were noticeably firmer (but not always perfect, always some looser ones, but talking weekly average), less urgency and consistently 3 a day with the occasional 2. The abdominal discomfort slowly improved as well. So it is baby steps, and small improvements over each week. Cumulatively they are huge, but there is going to be daily or bm-to-bm randomness where things are notably worse, healing is never linear. It took a long while to consistently get 1's.

Oh I know what you mean. I'll occasionally have a skip-day, and I'll be TERRIFIED all day long. Repeatedly sit on the toilet and keep trying to go. I mean, you get a "poopcation" and you'd think there'd be great celebration and joy but it is far from it. We just worry, because suddenly our world makes zero sense ...

Celeriac said...
Thanks — me too. It still feels weird to say that my doctor isn’t worried about copious butt blood because this is my life now. Also hemmies. So I don’t even know what’s bleeding.

#AnyDayNowRemicade

I hear you. That would be so frustrating. It's hard to be patient when you don't know if the meds will even work eventually or not!