Unexplained Nausea while on Remicade

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My son's been on Remicade since April 2015. He goes every 8 weeks with no problems and no Crohn's symptoms. He had his last infusion on the 29th of Oct. Now for a few nights he says he feels nausea but not enough to get sick. We really don't know, is this normal? I wouldn't think it would be a stomach bug because it hasn't progressed. Thought it might be something he's eaten within these last few nights but I'm starting to think not.

I guess I need some input. I guess I'm just worried. :sign0085:
 
I would keep track of symptoms. If there is a new symptom that seems persistent then I always give the GI nurse a call and let her know.

C never got nauseated from remicade. There were times that he would have more bms or lab work didn't look great and this is usually when the schedule would be shortened or the dose increased.
 
I guess I'd give it about a week, but then call if it still persists. Maybe start a food diary for now and see if there is something triggering the nausea? Is he lactose intolerant or anything? Gluten intolerant? Is it only at night?
 
The nausea didn't start right after the last infusion on Oct. 29th. I started about a day ago on November the 10th the nausea came in the evening and over night on and off with a slight pain in the tummy. The crazy thing is He's been on Remicade since April of 2015 with no problems and only improving labs each time. His GI put him on Remcade to get him to remission. His last scope showed no structures. He's been doing so well the plan is to stop remicade this coming April and start him back on Azathioprine like he was before. The other crazy thing is on November the 10th we went to see his GI during the day. I did call the GI's nurse this morning and she suggested the flu. But I told her no fever and he's never gotten sick. She said she would let the Doctor know.
 
No he's not lactose intolerant. A food diary might be a good idea. I never think to ask since the GI my son is seeing now is the 2nd one he's had. We out of frustration with his last GI changed doctors. But that parts kind of good in a way because my son is now 13 and his current GI is a male doctor. The first GI my son had was a lady and very young. I think he was a little uneasy when she would have to do a physical exam on him. But anyway back to what I was saying no one has ever said anything to us about keeping a food diary.

I'm sorry if I sound a little punchy in my post(s) I think I only got two hours of good sleep last night. Maybe 3 or 4 the night before. I'm not one to just go back to bed after I get up for the day. My son was going to go to school today because when he woke this morning he felt good, tired but good. He got ready and about 10 min. before we needed to go down for the school bus he started feeling bad again. It's been coming and going more often today.
 
Why would they take him off of remicade? It's not that kind of med. The probability to his body creating antibodies to remicade from stopping it is fairly high. This means he won't be able to go back to it if needed.

My son was on Remicade for over two years but in that time there were schedule and dose adjustments due to symptoms breaking through before the next dose was due.

My son had to stop remicade for surgery and even in that short time his body built up antibodies so that when he started back he started having reactions. This led us to testing for antibodies and they were high. So remicade is no longer an option.

There are a lot of kids here on combo like remicade and imuran (azathioprine) or remicade and mtx and they will sometimes back off or stop the immune modulator (azathioprine, mtx or 6mp) after 6 months to a year but not the biologic (remicade, humira).
 
Clash said:
Why would they take him off of remicade? It's not that kind of med. The probability to his body creating antibodies to remicade from stopping it is fairly high. This means he won't be able to go back to it if needed.

My son was on Remicade for over two years but in that time there were schedule and dose adjustments due to symptoms breaking through before the next dose was due.

My son had to stop remicade for surgery and even in that short time his body built up antibodies so that when he started back he started having reactions. This led us to testing for antibodies and they were high. So remicade is no longer an option.

There are a lot of kids here on combo like remicade and imuran (azathioprine) or remicade and mtx and they will sometimes back off or stop the immune modulator (azathioprine, mtx or 6mp) after 6 months to a year but not the biologic (remicade, humira).
Click to expand...
I think that might be what happened with me. I took myself off because of the expense. My doctor put me back on after the resection. I had a rare reaction called folliculitis. Check with your doctor.
 
Hi, does he take methotrexate as well as Remicade? The MTX makes my son nauseous. Zofran fixes it, but he hates the feeling of the zofran, so most of the time he just deals.
 
My understanding is that folliculitis isn't all that rare in IBD patients on immune suppressing drugs. O gets it constantly and she has stayed on Remicade through it. T has gotten it once or twice.

Ron: Perhaps your case of folliculitis was a really bad one and caused more complications than most.
 
Same here
DS had folliculitus more than once on remicade and humira
Just treated it and he was fine.

DS has nausea a lot but he has since dx.
Regardless of whether he was on biologics or not including remicade .
Food diary helps
No liquids at meals
Drinking plenty of fluid ( small amounts throughout the day ).
He only gets to miss school for a fever or active vomiting ( more than once )
Otherwise off to school he goes

Is constipation an issue ? DS has had this since dx and if it's worse nausea gets a lot worse
 
CIC, I agree. I've read of a number of patients that get folliculitis and that may not necessarily due to developing antibodies.

But still back to the OPs post of coming off Remicade once remission is achieved that is generally not recommended, right? MLP, you have any papers on this?

Unless there is something to do with his age but farmwife has one really young on remi, right. Maybe if there under 3 there is a different recommendation?
 
I will have to look but every study I have seen once your off remicade the odds are against you being able to restart it again in the future .
 
My daughter has nausea on and off, and it's hard to know exactly what causing it. There have been times that it has just been a Crohn's symptom, and increasing her Remicade dose took care of it. Other times, it seems to be a reaction to a certain food.

Lately though, E's had a few times where she gets really nauseated for several days, even throwing up a few times, and we're starting to think she has a stricture. The first time it happened, she had eaten a bunch of pineapple core the previous day (without our knowledge!), and the second time, she had eaten a vegetable curry with a lot of cabbage. We think those fibrous foods may have caused a partial blockage. Both times, she lost her appetite too, so we kept her on a liquid diet a few days and the problem went away. We've had her back on a low residue diet for a few months, and the nausea hasn't come back.

Hope that whatever it is, that your son is feeling better soon.

With regards to going off Remicade, I agree with the others above: that I wouldn't take my daughter off Remicade now that she's on it, for fear of antibody formation.
 
Clash: Absolutely. Our doc will not consider a drug holiday off Remicade for O because of the fear of building antibodies.

The fear of antibody formation is a main reason why so many GI's have the kids on combo therapy with immunomodulators and why they check Remi levels.

Antibodies aside...50% of those who come off biologics for a drug holiday will flare within I think it is two years. Bottom line if it ain't broke don't fix it.

http://www.ncbi.nlm.nih.gov/pubmed/26381892?dopt=Abstract
 
What is his current Remicade dose and schedule? I'd be concerned about coming off Remi also.
 
I forgot to mention... there is a app call My Fitness Pal that you can track daily food intake. It's an easy and simple way to do it and then in a notebook you can track symptoms by day.
 
Clash said:
CIC, I agree. I've read of a number of patients that get folliculitis and that may not necessarily due to developing antibodies.

But still back to the OPs post of coming off Remicade once remission is achieved that is generally not recommended, right? MLP, you have any papers on this?

Unless there is something to do with his age but farmwife has one really young on remi, right. Maybe if there under 3 there is a different recommendation?
Click to expand...

Yes Clash, Grace was 5 when started Remicade. We were told that once started, she would stayed on it until it was no longer effective. We were told the same with Humira.
 
We were told the same - the risk of antibodies is too high. That said, my daughter went on and off Remicade 3 times. She didn't have a reaction but MANY kids do. We only re-tried Remicade because she was running out of options.

I would keep your kiddo on Remicade as long as it works so you don't risk an allergic reaction. And I'd also look at other causes for nausea - lactose intolerance (it can develop, even if he didn't have it as kid, he have it now), other food intolerances, gastroparesis, reflux etc.
 

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