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Remicade dosage

Hey everybody, I hope all you guys are doing well.

A brief history of my experience with Remicade. I originally started last August with the three loading doses at 0,2, and 6 weeks, and every 8 weeks for maintenance. I am currently on the standard dosage. I have been doing really well on it. I was also on 6mp along with the Remicade until this February.

In March around 2 weeks before my infusion was scheduled, I began to experience loose and more frequent bowel movements. At the time, I was worried that I had built antibodies to the Remicade, but when I finally received my infusion, everything went back to normal. This lead me to think that my levels of Remicade were becoming low at around week 6. My original theory behind this is since I am an endurance runner, my metabolism has increased since running increases your metabolism and that I was also burning through the Remicade more quickly. So, right before my next infusion in May, I got my blood work done and the results said that my levels were adequate and that I had no antibodies. This really puzzled me. Unfortunately, they did not check my inflammatory markers.

As of right now, my next Remicade infusion is in two weeks, and as of today, my stools are starting to become loose again. My doctor is not convinced that I need a higher dose of Remicade or that I have to move it up to every 6 weeks. He did say that if I do start to experience symptoms again that I should get my blood work done again to check the inflammatory markers. Any thoughts or advice of what I should do? Thanks!
 
Do you know what the levels were for the Remicade? Some people require higher trough levels. My GI said 5-10 is where he would like to see it at. It does sound like your need to move closer to 6 weeks. My son was in a similar situation but his levels came back as near zero so he was moved closer and then dosage was increased.
 
Hi Jo-mom and thanks for the reply!

Unfortunately, I wasn't told what my levels of Remicade were. He just told me that they were adequate and that he was satisfied. I'm guessing that I should call him and let him know what's going on. He's probably going to want to check my inflammatory markers again and if they are high, that might convince him to switch to every 6 weeks. I would like to stay on every 8 weeks with an increased dose, but I don't think my doctor would like that suggestion.
 
Hi awoenker12 - yes you should definitely find out more - it really sounds a like an easy fix. If your inflammatory markers are high, then moving it closer should help. Hopefully it won't take too long.
 
Ok, so I got ahold of the doctor and from the previous infusion, my remicade level was at 3.7. My doctor thinks anything above 3 is adequate but from what I've researched, that sounds kind of low. I'm still waiting to hear back if they are going to order more blood tests and if they are going to move up my infusion to this week.
 
From what I have learned, although 3.7 isn't too low - most doctors aim for a little higher - my son's GI said 5 to 10 is what he likes to see - generally 4 to 7 is what is normal, but I have also read that some people require a little higher trough levels, so you might need just a tad more.
 
Lisa- I think my doctor is a bit conservative when it comes to meds. He didn't seem too concerned last time when my symptoms were becoming worse around week 6 and did not suggest moving my infusions to every 6 weeks.

Jo-mom- I'm still waiting to hear back from the nurse's office. 3.7 just sounds too low from what I hear from everybody else. Hopefully they'll move up my infusions to every 6 weeks.
 

Lisa

Adminstrator
Location
New York, USA
I see you say you are on the 'standard dosage' - what exactly is that? I'm on the minimum dosage of 5 mg/kg - even with me currently being at the high end of the weight (a 'side effect' of being healthy!) my levels have been good - HOWEVER I do sometimes get days with occasional pain, bloating, loose stools etc....but nothing that shows up on my annual scope. Speaking of which, I have one in a little over a month - a couple weeks before my infusion....
 
I'm pretty sure the standard dosage is 5mg/kg. I understand how some people may have loose stools and occasional pain, but there is a distinct pattern that I have noticed since March. By the 6th week, my stools are not shaped as well and are slightly more urgent. Then they increase in frequency from once a day to 3 to 4 times a day, and eventually total diarrhea. It is odd though that I don't experience any abdominal pain or bloating- just loose and more frequent bowel movements.

Anyway, I got a call back from the doctor and he met me halfway and decided to move my infusions up to every 7 weeks for now. He didn't bother to check my blood work again this time.
 
7 weeks is better than 8 weeks. It does sound to me that your levels are on the low side towards the end and thus causing the looser and more frequency in bowel movements. Hopefully this will modify it and if not, you might have to make another call to the doctor.
 
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