Hey all

I am finally about to start Remicade treatment for pouchitis. I see people on the forum saying they have "bad reactions" to it - what exactly can that be?

First infusion will be on Monday and then Monday two weeks later. My worry is that I am going on two different trips on both Tuesdays following my infusions... what's the worst that can happen in terms of risks with Remicade?

Bonus question: I forgot to ask the GE if I have to quit Ciprofloxacin. Can I use antibiotics while on Remicade?

Original Post

I am one of the persons who developed a reaction to Remicade.  For me the reaction occurred after the second infusion, which I was told is not unusual.  I felt light headed and very dizzy.  For me this started during the last half hour of the infusion. The following day, I just felt off. (I had my son's high school graduation party the next day, and muddled through, but didn't feel that wonderful.) 

I had the third infusion even after reacting weird after the second infusion.  The nurses said that some people do fine with this one even though they had a previous reaction.  I didn't get dizzy this time, but starting about two hours following the infusion I got  very severe muscle and joint pain.  It hurt just to sit in a chair let alone walk around.  It lasted about a day following the infusion.  This felt so much worse than the time before.  My doctor then switched me to Entyvio and I've handled that well.  He said that even if the Remicade was working, it wasn't worth it to me to feel so awful.

That begin said, just because some of us have had reactions, doesn't mean you will.  A lot of folks use Remicade without any issues at all. I'd recommend taking someone with you to the first few infusions until you get a feel for how you'll react.  (Learned that the hard way.)  I'd also wait and see how you feel a few hours after the infusions to and then decide if you need to adjust your trip schedule.  (You won't know how your body will react, if at all, until you do it.)

When on antibiotics, it depends what you're on them for whether or not you can have the infusion.  I was able to have my Entyvio infusion when the antibiotic was for pouchitis and not an infection.  I've also had an infusion when I was at the last day of taking the antibiotic for a UTI infection.  I'm guessing it depends on the policies in place for the the infusion site.

Best of luck and I hope you remain reaction free and the Remicade is a good fit for you!

 

 

 

Thank you STILL STANDING for sharing your experiences with me.

I just realized that I have actually tried Remicade once. It was back when I developed aggressive UC quickly and they tried treating it in different ways. Remicade was the last thing they tried but when it turned out to be ineffective against my severely inflamed colon I went into surgery. Besides not working on my UC I do not remember any side effects from Remicade. Sure, I was feeling pretty awful overall back then, but I'd like to think that it's a sign that I will not react poorly to Remicade this time  

If you have a reaction it will happen during the infusion. In 4 years of getting infusions in the so called “Remicade Room” in Guilford, CT, usually getting infused with 3 other patients at a time, I have witnessed only one reaction and it happened within the first half hour of that person’s infusion. I would estimate I have witnessed, just doing the math, at least 150-175 other persons infused with no reaction. So from my experience it was 1 out of 150-175.

The reaction will most likely abate as soon as the infusion is stopped. 

If you have had prior exposure to Remicade, you should be tested for antibodies before starting. If you have antibodies, you may be more prone to a reaction or be less likely to respond to treatment (antibodies block the action). I have been on Remicade for several years without issues. They give me Tylenol, Clariten and IV steroid before each infusion to prevent reactions.

Jan

 

A little update. I had the first infusion and it went well, and so did my trip. Greetings from Hamburg y’all

I think Remicade works fine for my pouchitis. I think my symptoms have improved - two days in. The nurse told me most people show the biggest improvement right after infusion no 2.

I’m beginning to feel a little optimistic for the first time in a long time. Thus far my symptoms have worsen very slowly over the course of 5 years but I’d like to think that remicade put me on a new course.

i have question regarding fistulas. Anyone had them? My year long battle with anal itching was thought to be due to a fistula my surgeon noticed on the MRI. Unfortunately neither my surgeon nor my gastroenterologist focused very much on it claiming it was because of inflammation and that it would hopefully heal once they figured out how to tackle the inflammation (which I hope Remicade will do successfully!).

My question is, what the heck do fistulas have to do with inflammation or pouchitis? And what do they have to do with itching?

as always; looking forward to hearing from another j poucher 

Not to put a downer on what is so far a good thing for you but another issue you can have is Remicade putting your immune system into a non working state. I had to go off Remicade because my immune system shut down. I also developed issues with the infusion over time.

I hope you have continued luck with it.

I had Remicade about 20 years ago with UC. It put me into remission. Fast forward to jpouch and fistulas. Last year I was given Remicade again after having been tested for antibodies (negative) but developed serum sickness a couple of weeks after the first infusion. The symptoms all cleared and I didn't continue on Remicade.

The fistula was likely caused by an undetected leak at the anastomosis but in   the unlikely event that the fistulae were as a result of Crohns I was given a trial of Humira. I had a much worse reaction to it ("lupus like syndrome" and some likely permanent nerve damage in my legs).

I know I sound like such a Debbie Downer but even though most people have great success, some of us just don't respond well with biologics. 

 

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