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Remicade n steroid tapering

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Ulcerative Colitis
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Posted 8/20/2018 9:24 PM (GMT -5)
So my son had his third Remicade infusion while tapering prednisone. He was doing very well ( no blood or mucus) for two weeks and we were able to taper the prednisone to 10 mg (started at 40 mg) decreasing by 5 mg at a time. We hit 10mg yesterday and the blood and mucus is back. Is this quite unusual?
Posted 8/21/2018 7:31 AM (GMT -5)
We all feel wonderful on prednisone but must be able to sustain without pred. Tapering pred is always a source of anxiety as we never know if we can do without it or not. Sometimes we can and other times we cannot.

I would go back to his last safe dosage of pred, where there was no blood or mucus. I would call his gasteroenteroligist and wait for instructions. Typically, you hold at that safe dose for a predetermined period of time. You either make changes to meds/doses or simply wait longer, and then try the taper again with better results.

Two possibilities:

1.) He might've tapered too fast, you're at 6-weeks into remicade and it might take another month before he's ready to go to 10-mgs or below of pred. Did he get any noticeable improvements on Remicade, and/or are they fleeting? Has he had a remicade concentration blood test done? Dosage and frequency of remicade are variable, and he might just need more.

2.) His current maintenance medications are not enough to sustain without the pred. What else is he on?

I'd bet on #1 at the moment. It's frustrating, we all dread the pred and want to be off of it yesterday. Pred has a purpose, it's like crutches that help us get by and buy us time for our other meds to work. Get rid of those crutches too soon and it hurts to walk without them. Same thing here.
Posted 8/21/2018 9:38 AM (GMT -5)
He was without symptoms for two weeks after his Third Remicade infusion so I think the Remicade is working. He is also on weekly methotrexate and the Pred.
Posted 8/21/2018 10:30 AM (GMT -5)
You cannot conclude Remicade is working (or any drug) when on steroids. The effect could be entirely the steroid.

IF symptoms improved, above improvement on pred, when adding remicade, that is some evidence remicade is helping.

The blood is because of withdrawing the pred.

Either remicade will work and blood goes away, or remicade plus some other med like mesalaming or 6mp works, or remicade fails.

this is not "quite unusual" because upto 30% of people do not get remission from remicade - it helps about 65% of people.

good luck
Posted 8/21/2018 12:58 PM (GMT -5)
I agree with the others, and I think you're going to have to slow down with the pred and be patient. A lot of people need more than a few doses of remicade to get to 100%. Hopefully that's what's going on here, and not the alternative (no response). Getting down to 10mg is great, but it doesn't mean he's ready to get off prednisone entirely. I know it's hard to wait, especially considering how awful prednisone is, but better to go slower and get off it for a long period, than to rush and end up elongating the course. Often when we rush, we have to go back up to 40mg, and it takes longer than you imagine it would to get off. How long has he been on prednisone? Did he start it at the same time as the remicade? Or was he on it previously and the resmicade really jump-started the improvements?
Posted 8/21/2018 6:29 PM (GMT -5)
He was on prednisone when he was diagnosed two months back. We saw little improvement with the first Remicade infusion but the second was like magic and with the third all symptoms were gone until the prednisone taper hit 10 mg. He was moved up to 20 mg today; let’s see if his symptoms improve 🤞🏽
Posted 8/22/2018 10:10 AM (GMT -5)
This is has been my exact situation. I've had to go back up to 30mg Pred to remove symptoms and there I remain waiting for my 4th Remicade treatment. GI will take blood ahead of the infusion and test for Remicade levels and antibodies to see if it's time to switch to Entyvio or to increase the frequency of Remicade... So yes, patience... it's a marathon and not a sprint... but we all need to get off this Pred... I've been on it since May 2018... at levels from 40mg taper to 10, then up to 20, then back to 30 - all while I've been doing Remicade... 4th Infusion on Tuesday... Hang in there!
Posted 8/22/2018 7:33 PM (GMT -5)
Mamabear-

I had a remicade level done the other day and I'm 5 weeks out from my 3rd infusion. I had some symptoms return after weaning below 5mg but I am now noticing that I am having more good days than bad. I didn't go back up on the prednisone because the symptoms were mild, but I didn't expect to improve. The reason I had the level sooner than 4th infusion timeframe is because my doc said we could potentially do another loading dose to build up the levels. I have not heard of this but maybe you can ask your doctor about that. Be patient though because things may start turning for the better real soon.
Posted 8/22/2018 7:38 PM (GMT -5)
One more thing I would like to add is that I restarted the Balsalazide and added Turmeric to my med regime and I do think this helped a lot.
Posted 8/24/2018 10:34 PM (GMT -5)
Thank you. Hopefully things will be more stable after the fourth infusion for all of us.
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