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iPoop -- Remicade question

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Ulcerative Colitis
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Posted 8/2/2019 9:42 AM (GMT -5)
How long after you started Remicade until you were completely symptom free? I know you said you started to see it working after the loading doses (I think), but I am curious how long it took for all symptoms to go away.

I had been feeling good at the beginning of July a couple weeks after the first maintenance dose and then I got hit by that virus that took a couple weeks to clear. I am better than I was when I started remi, but not as good as I was before the virus. I am due for my next infusion in 2 weeks.

Thanks!
Posted 8/3/2019 8:26 AM (GMT -5)
I noticed my 1st positive improvement at week 3, a much bigger improvement at week 7, I was off of pred at week 9, and it was slow and steady progress thereafter. I didn't realize a remission until about 1-year in. Given that the flare inquestion was 25+ bms a day, and pure agony. Lesser flares with less damage done, would likely heal faster.
Posted 8/3/2019 3:40 PM (GMT -5)
Thanks, John. I've been on remi for about 5 months and thought I would be in remission by now. Like you, I was in pretty bad shape when I started and I am so much better than I was but still have some minor bleeding, not always fully formed stools 4-5x/day, occasional urgency. Not awful and it doesn't have much of an impact in my life, but not there yet.

I see my doc next week and he's been pushing Xeljanz, but I think I want to give Remi more time, keep an eye on my levels and increase dosage if necessary. It's definitely working. Just not as fast as Entyvio did for me.
Posted 8/3/2019 4:13 PM (GMT -5)
You can add 6mp/imuran/aza to remi as well. Might give you the extra boost needed to get across the finish line.
Posted 8/3/2019 6:27 PM (GMT -5)
I was on 6 MP for about a month when I started remi, but then I started feeling nauseous and stopped. The same thing had happened to me on aza just before my LFTs went really high.
Posted 8/4/2019 8:39 AM (GMT -5)
Maybe methotrexate then? A little unconventional for UC (but our Crohn's disease friends regularly use it), but worth considering if the aza/imuran/6mp group didn't work for you due to adverse reactions.
Posted 8/4/2019 2:28 PM (GMT -5)
CC

Ask to increase your Remicade . I had to go to 7.5mg/kg every 8 weeks to achieve remission. My current Remicade level is 15 and I’m not on any other meds. My doc said he has people with levels of 20. We played around with my dose until I achieved remission which happened about 4-5 months after the first starting dose. I wouldn’t switch meds just yet. Go to University of Penn. You will only have to drive there a few times a year. Doc gives you his cell phone and manages from there.
Posted 8/5/2019 11:55 AM (GMT -5)
My level was 5 just before the first maintenance dose. I suspect it has dropped since then. I am currently on 5 mg/kg every 8 wks. I see my doc on Thursday and will discuss options with him. I would like to give remi more of a chance since I know it's doing something as I am no where near as bad as when I first started on it.

Is University of Penn in Philadelphia? That's a couple hours drive so not crazy about that. I had checked out Hershey/Penn State Medical Center and when I first saw them a couple years ago for a 2nd opinion they were really nice and I considered switching to them. But when I saw them again last summer they were much more into "standard protocols" and I felt like I was not allowed to question anything and what they said was law.

Today is not a good day. 5x already today sad
Posted 8/5/2019 1:44 PM (GMT -5)
Ask to increase the RemicAde then. Your level could be much higher.
Posted 8/8/2019 11:30 AM (GMT -5)
Saw my doc today and he is going to increase my remi to 10 mg and stay at every 8 weeks. He said he should be able to get it approved before my infusion next Friday (8/16). Yay!

Scope is scheduled for 9/30 so hoping the higher dose kicks in by then
Posted 8/8/2019 11:48 AM (GMT -5)
That's great! I hope the higher dose works for you. I think my dose is 5. I didn't know what you guys were talking about when I read this thread the other day, but I looked at the monitor today and it said 4.9 mg/kg.
Posted 8/9/2019 8:42 AM (GMT -5)
That’s great CC . I hope it works well and I have a feeling it will!
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