Looks like I'm flaring on infliximab :(

Hi all, been a long time since I posted here.

I've had UC for 7 years now, but only ever had one flare up which happened ~2 years ago. Unfortunately it was a pretty bad flare and didn't respond to steroids, and so they put me on IFX/Remicade. That was a god send. I was passing solid BMs pretty much the next day.

Over the last 2 years I've not had any bleeding, but did occasionally have brief episodes of "something" where I would felt bloated and totally lose my appetite. I went to my GP and talked to my GI and they both seemed to think it was IBS. I had a colonoscopy around the time of one of these episodes which showed my guts were 100% fine.

about 3 weeks ago I started having another one of these episodes, but this time I was passing mucus as well. I had read that IBS and constipation can cause BM mucus, and I was passing pretty solid stools, so I didn't think much of it. However today I've noticed blood on the TP after wiping, which has thrown me into a massive panic attack.

I'm not really sure what to do now. My last infliximab infusion was only last week, so I guess I'm not responding to it? I've never had any kind of reaction after recieving the IV or anything.

Has anyone had a flare whilst on infliximab? Could it just be a temporary thing? I have been pretty stressed out over the UK EU referendum...

Get stool tests for infection/parasites and check fecal calprotectin.
Also get a blood test to see if you have antibodies to remicade.

It it possibly hemmerhoids or fissures?

Ditto what dikid said. Contact your gastroenterologist. Get a stool test to check for pathogenic causes, standard uc flare protocol aa c difficile and other pathogens mimic uc flare symptoms. Get an infliximab/remicade antibody and serum trough (minimum) level test ordered 24 hours prior to your next infusion. It's possible your remicade dosing needs adjustment, if you have antibodies to remicade. You're on 5mgs/kilogram every 8 weeks of remicade, so if your test shows low concentration then they can increase your dosage and frequency up to 10mgs/kg every 4 weeks.

And blood can be from hemorrhoids as well.

I would be thinking of adding rectal meds such as mesalamine enemas if possible.( I think called Salofolk in the UK) Could be a proctitis flare up and you don't want it to get any worse. Keep us posted.
B

I've had 2 flares while on remicade BUT there were extenuating circumstances.

Flare #1 was after a week in the hospital with pancreatitis followed by a week in the hospital with c-diff colitis. I was very sick and within a few days after being discharged, I had a flare of proctitis that I couldn't manage at home. My docs arranged for me to get my remicade infusion early but I still ended up in the hospital again because of nausea/vomiting. After that admission my infusions were changed from every 8 weeks to every 6 weeks.

Flare #2 was in the setting of 3 months of humira that I quit b/c of side effects. After my last injection, I started having break through UC cramping which never occurred while on remicade. I resumed remicade after humira but continued to not feel well. I lost 25 lbs from nausea, switched to an academic doc, he gave me rectal meds and zofran. Long story shorter, I had another proctitis flare.

It's been 18 months and I'm feeling very good now. I had the antibody testing done during both flares, both within normal limits. Both flares required IV steroids and a lengthy taper at home. I'm still on remicade 5mg/kg q 6 weeks.

Just a quick update.

Not seen any blood since that first time, but had hard stools and mucus again today.

I also got the results from a stool sample I submitted, which said my calprotectin was over 1000, indicating active disease.

They want me to submit another one to test for any infections and do a blood test before my next dose of infliximab (August) to check for antibodies.

Feeling a bit down about it... I'd convinced myself that it was something non-UC related. Infliximab was a wonder drug for me when IV steroids were doing nothing, so I hope I haven't developed antibodies against it. I seem to be running through all the standard treatments pretty quickly.

Another update:

So I've pretty much had the same symptoms for almost 6 months now!

I had my Infliximab drug levels and antibodies checked which showed that I had low, but adequate drug levels (3.27?) and no antibodies.

Currently on what is in my sig, plus 2g mesalazine enemas at night and I've been following the SCD for 3+ months.

I seem to have "good" and "bad" phases. In a good phase, I have D in the morning (w/ lots of gas!), then a normal stool around lunch time. In a bad phase, I have D in the morning, then 2 or 3 stools with clear/white mucus and lots of gut pain/constipation.

Going to see my GI again in December, where I'm thinking he will want to do a colonoscopy and then perhaps increase my dose or switch me to Vedolizumab?

What's your current frequency? I started flaring when I had the infusions every 8 weeks and we had to change it to every 6 weeks and it was better.

Andrina said...
What's your current frequency? I started flaring when I had the infusions every 8 weeks and we had to change it to every 6 weeks and it was better.

Every 8 weeks. The thing is though, my symptoms don't seem to be any different before/after the infusions.

Sam1996 said...
I've had mucus on and off through out a 4 year remmission period, so I wouldn't worry about that part. I'm actually experiencing something similar to you right now, though. I've had a little blotch of blood on the toilet paper after wiping (first wipe only, and nothing on the stool), a few times this month. GI said it might be because of hard stool. IDK though. It might be something bad, but we might be fine.

To be honest, I can handle the mucus, constipation and diarrhea. The thing that is worrying me is that I have been losing weight despite tracking my calories and ensuring I am eating more than enough for someone of my activity level (office job, no exercise).

Good and bad news from seeing my consultant yesterday...

Firstly he said he didn't think my symptoms were a UC flare (?!) because apparently the calprotectin of the second stool sample I submitted was only 300 (down from 1000) and a spike followed by a reduction is more likely to be from an infection than a flare-up. Also I don't have D or bleeding etc. and my IFX antibodies/levels were fine.

With regards to my weight loss, though, he wants me to go and have a couple of tests (MR Enterography and capsule endoscopy) to see if I have Crohn's/Colitis!

Currently 2500 - 2800 kcal per day

I will try and eat more but it already feels like a full-time job.

Before this mysterious illness I estimate I was only eating around 2000 kcal per day.