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Ulcerative Colitis
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UCinsouthfl
Regular Member
Joined : Mar 2014
Posts : 194
Posted 5/25/2021 1:43 PM (GMT -6)
Hello my people...

I've been battling a nasty six month flare. I've failed 3 biologics but just started remicade about 6 weeks ago. I was able to ween completely off prednisone (which is a miracle) about 3-4 weeks ago. My bowels have improved but I still use the bathroom at least 3-5 times a day. There's no blood and stool is mostly formed.

My doctor wanted to start me at the highest dose of remicade because I've failed the other 3 biologics, but the insurance company wouldn't allow it. I have an appointment with my GI tomorrow for a check up. I feel like remission should be using the bathroom only 1-3 times a day completely formed???

I'm curious to hear your thoughts. Any feedback is appreciated!!
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2148
Posted 5/25/2021 5:45 PM (GMT -6)
What dosage/frequency of Remi are you on? I agree with your definition of remission. But I think you should give whatever dose of Remi you are on a bit more time. Still early and as long as you are improving slowly week by week, or even month by month that's a good thing.

I was in a bad flare when I started Remi after 2 previous biologics stopped working. Saw a lot of improvement pretty quickly and was functional, but I haven't been able to get to remission yet and it's been 2 years. We increased the dosage after 5 months, then increased the frequency after another 5 months. Stayed at 6 weeks for about a year and in April we maxed to 4 weeks. Have seen more improvement after the switch to 4 weeks so am hopeful. Now going 2-3 x/day (sometimes 4,my normal is 2-3 in remission), somewhat formed or pieces most of the time, no blood for months. Just not quite there yet.

Some people respond to meds really fast. Some don't. Patience is very hard, but hang in there. You were able to get of Pred! That is huge!!
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FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1373
Posted 5/25/2021 6:06 PM (GMT -6)
I agree with CC. With entyvio I was also able to wean off prednisone successfully but full symptomatic remission didn’t happen until month 4 or 5. 6 weeks is really early yet but you are showing a response with your successful wean off steroids so I’d take that as a huge positive.
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5719
Posted 5/25/2021 8:01 PM (GMT -6)
I can't speak to the biologics issue, but if you now have multiple bms daily without urgency it does sound like you're slowly improving. Plus no passing of blood or mucus, also a very positive sign. You may be able to further reduce daily bms with some diet modifications in addition to med regimen. Best wishes for continuing improvement! / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)
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UCinsouthfl
Regular Member
Joined : Mar 2014
Posts : 194
Posted 5/26/2021 2:36 PM (GMT -6)
Thank you for your input! Much appreciated...

When I went to the doctor today, he basically said the same thing as you guys.

"Its encouraging that I'm showing improvement, and it may take some time to achieve FULL remission."
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