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2.5 mgs/kilogram of remicade?

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Posted 6/6/2016 6:32 PM (GMT 0)
Seeing my gastroenterologist this week and one thing he's bound to ask is about reducing my remicade (which is the only medication I am on) from 5mgs per kilogram every 8 weeks to 2.5mgs/kg every 8 weeks.

Would you?

I'm currently in histological remission, no symptoms at week 8, my last c-reactive protein was 0.10 mg/dL (fall 2015), no remicade antibodies with a minimum concentration of 13 (anything over 3 is good), prior to my infusion (again fall 2015). Mine is a very high serum concentration at 24 hours prior to an infusion. Given I was on 6mp at that time, and I'm now off of 6mp.

I'm decided cautious and I'm thinking the most I'm willing to change is 5mgs per kg every 10 weeks (instead of 8). Beforehand, I'd want to see a new CRP and likely another infliximab minimum and antibody test, as they're both so darn dated. I'm guessing he'll ask for those updated, but I'd insist.

Any other thoughts or things to consider?
Posted 6/6/2016 6:51 PM (GMT 0)
Personally I'd wait a year of being off of imuran before I lowered the dosing or discontinued use of Remicade.

My thinking is that it takes about 6 months for the imuran to leave the body and then you probably want some time to see if your build up any antibodies to Remicade after being fully off of Imuran. Also it can take up to 6 months for a flare to fully develop to where you see symptoms.

I'd also add a 5ASA to the mix, I think that you should be on something....
Posted 6/6/2016 6:57 PM (GMT 0)
That's a tough one iPoop. I would definitely get the testing done before switching anything. Have you read any info on or does your GI have anything on remicade at the 2.5 dose?

I would be skeptical if there's nothing on it and would try the 10 weeks. If there is info and you feel comfortable you could try the 2.5 and get the testing done again after a few infusions.

Would your GI want to add anything if u went to 2.5? Is he trying to get you off remicade completely?

Worst case you go back to 5 mg or 8 weeks right?

Personally I would try 10 weeks first. Least risky.
Posted 6/6/2016 7:06 PM (GMT 0)
There's no real intention to get me off of remicade. Just want to adjust my dosing so my minimum remicade concentrations aren't through the roof (excessive).

A good point on wait a year. Mesalamines, I know they drop colorectal cancer risks, guessing that's why they were suggested.
Posted 6/6/2016 7:42 PM (GMT 0)
Personally I would be concerned with dropping the remicade when I was doing so well.
why did you stop the 6mp?
I would consider dropping if you were a) carefully monitored to predict flares (regular fcp/crp testing) b) have serum antibody levels tested c)take a thiopurine

my line of thinking is this, remicade is relatively safe, the minimum dose in moderate to severe IBD is 5mg and can go up to 15mg/kg, if reducing the dose will increase chances of flaring, necessitating steroids or other undesired outcomes would it be worth it?
another thing is that each vial of remicade costs about 1000 dollars, if you have to pay a high percentage for your medication, the savings might be worth it. just rememerb that flaring and hospitalization cost far more than the remicade does. if it would only save your insurance money and not yourself I would not be too concerned....

I always like evaluate pro and cons and see if the risk outweigh the benefits
Posted 6/6/2016 10:20 PM (GMT 0)
"Why did you stop the 6mp?"

My gastroenterologist said it's best to start remicade while on 6mp, however, it isn't necessary to remain on both indefinitely. I had pulled up some stuff late last year claining the same. He cited longterm melanoma risk, etc. Ge said if it isn't necessary to sustain remission then why take them both? It was a risk, but I took it. Ceased 6mp Jan 2016 and my symptoms have remained consistent.

His notes said to bring it up again in 6 months, this appointment. I haven't had any bloodwork since November 2015. I bet he'll order some.
Posted 6/6/2016 11:07 PM (GMT 0)
some docs are experienced in drug holidays, if he is one of them than perhaps go with it. some are not as experienced and I would be weary of those docs...

I would be apprehensive but this IBD thing has given me a touch of anxiety so it could be i am projecteing my anxieties...
Posted 6/7/2016 11:01 AM (GMT 0)

iPoop said...
"Why did you stop the 6mp?"

My gastroenterologist said it's best to start remicade while on 6mp, however, it isn't necessary to remain on both indefinitely. I had pulled up some stuff late last year claining the same. He cited longterm melanoma risk, etc. Ge said if it isn't necessary to sustain remission then why take them both? It was a risk, but I took it. Ceased 6mp Jan 2016 and my symptoms have remained consistent.

His notes said to bring it up again in 6 months, this appointment. I haven't had any bloodwork since November 2015. I bet he'll order some.

I am the same. I was on 6MP and Remicade for a year and which point on the basis of my bloods and stolls samples they decided to take me off the 6MP. That was about 3 months ago and things are still good. I got a letter from the hospital the other week saying I am in remission and my faecal calprotectin was 40. Of course the letter did not tell me what that means so I looked it up online and apparently if they were checking for suspected IBD in a patient and the result came back as 40 then they would rule it out so its a great place to be.

So basically I was in a good place when they took me off it and now symptoms have actually improved even more since.

With regard to the 2.5 mg Remicade question - is that normal if someone is respond very well to treatment? I always though they kept the same dose but increase the time between infusions.
Posted 6/7/2016 11:36 AM (GMT 0)
Essentially, tou can change remicade dosage in two ways:
1.) Adjust the frequency of doses
2.) Adjust the amount of remicade per infusion
Independently, both methods produce the same result in serum concentration. For example, a 5mg/kg dose every 4 weeks is equivalent to a dose of 10mgs/kg every 8 weeks, the serum concentration would be essentially the same.

Certainly my 5mgs every 10 weeks produces a much higher serum concentration than 2.5 mgs every 8 weeks. I'm much more conservative and cautious.

The appointment is tomorrow morning. I'll ask for how many patients he has at 2.5mgs per kilogram and more recent tests. I haven't heard much of 2.5mgs/kg doses for uc patients on remicade which gives me pause.
Posted 6/7/2016 3:12 PM (GMT 0)
I don't know anyone on 2.5 of Remi. At some point if the concentration is too low, the antibodies can form. Sometimes, like with my daughter, no antibodies formed at all but the mechanism stopped working. Then even at 10mgs per kilo at 2-4 week intervals nothing brought back a response. All hell broke loose. Our GI says that what got you there(remission) might just keep you there.
It is a sad day when biologic's stop, so proceed with a pro who studies this like a champ. It is a specialty of Dr Maria Abreau of University of Miami-and I 'll bet you can find more info if you go to the latest DDW conference data. She is a frequent speaker and has written much on Remi. Just a thought.
Posted 6/8/2016 1:19 AM (GMT 0)
I have never heard of cutting down the dose like--I've heard of people spacing out infusions further or completely going off of Remicade (the latter is my current GI's perspective--either stay on it or go off it completely). I'd look into this more before deciding...

ETA: Even though my GI would be supportive of me going off of Remicade (histological remission, very low CRP, etc.), I've decided to keep things as is--don't want to rock the boat!
Posted 6/8/2016 5:58 PM (GMT 0)
You get no side-effects from Remicade, right?

I wouldn't do it, personally. If I find a med which works, I'm staying on it and not reducing the dose.
Posted 6/8/2016 6:08 PM (GMT 0)
Yup, no side effects. Saw the doc today, he said run a new CBC, CRP, LFT and see you in 6-months. No mention of lowering my dose. Doh, fretting over nothing I suppose.

I do appreciate everyone's insights into this. I think it's an interesting question. Since it's in my case file then it will likely come up in the future.
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