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Getting worse after starting Prednisone

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Ulcerative Colitis
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Posted 7/1/2017 2:30 PM (GMT 0)
So, I have been on Apriso and then Lialda for the past 4 months with no improvement.
I was visiting the toilet with urgent watery (but not bloody) D at least 10 times a day.
I was also on budesonide for about a month with no change.

SO, they had me discontinue the budesonide and start 40mg of Pred daily, in addition to the Lialda (4 tabs daily) early this week.

Since starting the Pred, I am on the toilet at least 25-30 times a day, I'm seeing blood several times a day and for the first time I am waking up through the night needing to go.

My abdomen is sore, it feels like the inflammation is getting worse not better.

Has anyone had this happen? I had been hoping the Pred would really help, not make me get worse. Today is day 5 of the Pred.

Any suggestions would be welcome. I'm planning to call the doc on call today. I can't continue to live like this. My next appointment is on the 11th.

My diagnosis was mild pancolitis. And if this is mild, I'd hate to see severe or moderate.
Inflamation was least near the rectum and got worse the farther upstream they looked when I had my scope last month.
Posted 7/1/2017 6:29 PM (GMT 0)
It's unlikely the pred is making you worse. However, it is likely that your under-treated pancolitis is now worse and severe. I'd insist on a stool test and ask about biologics like remicade/humira/simponi. You should contact your gasteroenterologist about your worsened symptoms asap.
Posted 7/1/2017 6:41 PM (GMT 0)
If pred is making things worse then that may indicate that your inflammation may be the result of a C Diff infection rather than UC. Ask your PCP about checking that possibility.
Posted 7/2/2017 12:15 AM (GMT 0)
Have them check for different infections. Same thing is what happened to me. I was feeling bad, went on Pred, then it went downhill fast until they found they had cultured bacteria.
Posted 7/2/2017 1:09 AM (GMT 0)
I agree with what everyone has said. Get stool tests.
Posted 7/2/2017 1:20 AM (GMT 0)
C.diff sounds like a possible culprit, get tested.

It takes a few days for the tests to come back.

Do you have a slight fever and feel worse certain times of day?
Posted 7/2/2017 3:21 PM (GMT 0)
I suspect that if one does have an infection...the pred could make it worse.

Definitely have stool testing done. Get on rectal meds.

q
Posted 7/2/2017 8:04 PM (GMT 0)
Sounds similar to what happened to me a few months back. The prednisone simply did not work for me. It didn't make it worse but the pancolitis i had simply went out of control and prednisone did nothing for it.
I had to start taking remicade quickly to get it under check.
Good luck.
Posted 7/3/2017 1:38 AM (GMT 0)
Sorry for the delay in responding. Ended up calling the on call GI doc Saturday morning. After discussing he recommended going to the ER. They admitted me and got me started on 40mg solumedrol twice a day.
Blood and stool cultures have been collected but no results yet.
Frequency of diarrhea has decreased back down to the 10-12 times a day so that's a good start.

Today quite surprisingly, the nurse walked in with Remicade and infused that.

So all in all I feel like I'm on a path to finally getting this under control. Will probably be in the hospital another couple of days at least they say.

Thanks so much to everyone for your comments and suggestions!
Posted 7/3/2017 3:05 PM (GMT 0)
Good to hear! I'd still be curious as to whether u have c diff too?
Posted 7/3/2017 5:40 PM (GMT 0)
Just got cultures back this morning. C diff was negative.
Posted 7/3/2017 5:45 PM (GMT 0)
If desired, you can request a second test as it is somewhat prone to false-negatives.
Posted 7/3/2017 8:51 PM (GMT 0)
You poor thing, it does sound like C diff I hope you can get tested for it asap. I had a false negative, and so it is worth having it done twice.
Posted 7/6/2017 4:04 PM (GMT 0)
Thanks everyone for your comments and support.

Finally got home from the hospital late yesterday. So nice to sleep in my own bed after 5 days in-patient.

C.Diff was negative. But white count spiked. Symptoms are improving rapidly so I'm fairly happy.

Currently I'm taking Flagyl twice a day, 40mg Pred daily, and am scheduled to continue my loading doses of Remicade. I am assuming I will be restarting Lialda, but that was discontinued while in the hospital.

So all in all, I'm in a good place and improving.

Still waiting for my first regular poop of the year. It will be a milestone!

Thanks again.
Posted 7/6/2017 6:42 PM (GMT 0)
why are they giving you flagyl if you are negative for c.diff? To be honest you'd probably do much better on Vancomycin because you have c.diff like symptoms.
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