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pred question for iPoop or others

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Ulcerative Colitis
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Posted 12/6/2021 2:27 AM (GMT -8)
Hi,

New poster here but read a lot of old posts and do some research.

Question for iPoop (as i know he wrote previously on this) or anyone else who wants to chime in.

Been in a light flare all summer. Every time I go on Pred at 30mg my symptoms get better after a week but when I start the taper and drop to 15mg or so the CRP goes up again and I get symptoms.

Anyone experience this. It is kinda yo-yo. Do I need to be on 30mg for a longer time to shut down the immune activity? Should I ask the IBD nurse for a longer doze?
Posted 12/6/2021 3:16 AM (GMT -8)
I had this happen to me except that every time I tapered my symptoms got considerable worse. I eventually ended up on 40 mg of pred for 5 weeks and starting Imuran after my 3rd failure to taper. All told I was on prednisone for 6 months from start to finish but the Imuran has been a game changer for me. I also switched doctors after my second failure to taper prednisone, which may or may not have been a good idea, but I really like my new GI a ton more than my last one!
Posted 12/6/2021 4:35 AM (GMT -8)
Yes I agree that every time I fail the taper the symptoms that come up seem to have ramped up from the last time.
Posted 12/6/2021 5:27 AM (GMT -8)
I think you need stronger medication if you flare every time you taper pred. It's really not good to be on long or yo-yo courses of prednisone. I have osteoporosis from doing that - mostly my hospital's fault but I wish I would have started biologics sooner.
And yes I felt great on 30 mg. It didn't matter how long i stayed on a high dose, I would always flare while tapering.
Posted 12/6/2021 6:52 AM (GMT -8)
Same here. I was told that means you are steroid refractive— symptoms are well controlled on prednisone but return as soon as you start to taper off.

It’s a sign that you most likely will have to take a step up the medication ladder. Prednisone is harmful in the long run and can cause a myriad of problems.

What are your current medications? Are you using rectals?
Posted 12/6/2021 7:20 AM (GMT -8)
It’s really hard to get off of steroids. Have you added enemas? I’d start there. You could also go up to 50-60 mgs of Prednisone for a few days, then tapper fast towards 30 mgs and work you’re way down to zero.

Steroids have the most side effects.
Posted 12/6/2021 9:50 AM (GMT -8)
When I have used pred I always started with 40 mg for 10 days-2 weeks and then started the taper if I was seeing improvement. That last time I was on it I had to go to 60 mg to see any improvement.

How many times have you been on pred the last 2 years? You may need stronger meds so you won't need pred at all. What other meds are you using?
Posted 12/6/2021 5:00 PM (GMT -8)
You likely need a much much stronger maintenance med to successfully taper off of Pred. What meds are you currently on?

A typical course is 2 months beginning to end, usually long enough to shut off the immune attack.

My longest dance with the Pred devil was 1 year. Had to keep escalating meds from lialda, to 6Map, to finally remicade to get off Pred successfully
Posted 12/8/2021 8:01 AM (GMT -8)
Thanks for the comments. I'm on 6mp but due to start a biologic early in New Year. I was on a course of pred and it helped symptoms but when i came off it they returned.

Can I ask iPoop were you on high doses of Pred during that 12 month period or just lose dose maintenance.
Posted 12/16/2021 7:25 PM (GMT -8)
The onset of the flare I was on 40mgs of Pred. I was able to get down to and stay at 20mgs of Pred for most of that year, anything less and the flare returned with a vengeance. After that year on Pred, I got a DEXA bone density scan and had osteopenia (the lesser cousin of osteoporosis). I just barely measures in that category (by a tenth of a percentage point).
Posted 12/17/2021 3:23 AM (GMT -8)
Ah ipoop that's the best signature line. I might have to try that next time someone comes out with that...
Posted 12/19/2021 6:20 PM (GMT -8)

poopydoop said...
I think you need stronger medication if you flare every time you taper pred. It's really not good to be on long or yo-yo courses of prednisone. I have osteoporosis from doing that - mostly my hospital's fault but I wish I would have started biologics sooner.
And yes I felt great on 30 mg. It didn't matter how long i stayed on a high dose, I would always flare while tapering.


How long do biologics take to work?
Posted 12/20/2021 11:16 AM (GMT -8)
Depends. Entyvio gave me symptomatic remission around month 4. BUT I was able to successfully taper prednisone before then plus was MUCH better way before month 4.
Posted 12/20/2021 12:17 PM (GMT -8)
Depends on the drug and the person. I know people on remicade who felt better the same day as their first infusion (although took longer to get to remission).
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