Flaring between Remicade Doses

Hello all! I have a remi question for you all.

Let me give you a somewhat brief background. I was diagnosed with pancolitis (after having just UP for a few years) at the beginning of July and shortly thereafter started receiving my remi infusions. I completed my last loading dose at the beginning of Sept. I was on prednisone (which was a total game changer for me) at the time I started my infusions, but tapered off about midway through.

After tapering off my pred, I began taking 50 mg of 6mp. I was doing REALLY well (better than I have in years) for a few months. I had 2-3 BMs a day (first thing in the morning) with normal, formed stools. I had no abdominal pain, cramping, urgency, or gas. It was like a Christmas miracle.

Then starting around the beginning of October, I started noticing my UC symptoms again. It started with an increase in gas and frequency. After a few days of this, I ended up with a fever, body aches, and severe diarrhea. I am a teacher and a stomach bug/virus was going around my school, so I attributed it to that. After a few days the fever and aches subsided, but I was never able to get rid of the diarrhea. At first it was just an increase in frequency with a little bit of abdominal cramping and blood. about two weeks after that first "virus" I ended up with another fever, body aches, etc. Again I recovered from the fever and aches, but the diarrhea just continues to get worse. I am going 10+ times a day with ridiculous urgency. Almost to the point of having accidents. I am also seeing large amounts of blood, but not in every bm. I am on Coumadin so sometimes I think that attributes to my blood loss.

Most of my symptoms are occurring at night. I am also have rectal/vaginal pain. I am assuming it is from inflammation. This comes and goes and seems to be getting slightly better. I was on Canasa back when my diagnosis was just UP and have been trying to use them the past few nights. They are maybe helping with some of the inflammation, but I have a really hard time retaining them because of the frequency. The only thing that seems to give me some relief is the occasional imodium to help me get through the work day. It gives my poor butt a break! But then as soon as it wears off things are bad again. Of course I told my GI and she ordered some different labs. My C-Reactive was off the charts high, which she made note of. She then just told me if my symptoms continued to get worse she would schedule a flex sig.

I am scheduled for my next Remi infusion this coming Tuesday. SO I guess my questions are,

Could I just be flaring between my doses?
Is it common for a virus to cause a flare that is then hard to get under control?
Can I request to have my doses moved closer together or do I need to give the remi more time first?
If I do not feel better after my next remicade infusion, what should the next step be?!

F this disease!..

It could be from the virus, it's certainly suspect.

You can get a blood test 24 hours prior to your next reminder infusion to check your minimum remi concentration and whether there's any antibody formation that's making the remi less effective (some do gradually loose response over time). That test can be ordered by your doctor it's called infliximab serum trough and antibodies and it's available through lab corps, prometheus labs and others. If they can confirm that you're concentration is too low between infusions then your dosage of remi can be increased. A typical remi dose is 5mgs per kilogram every 8 weeks, and the dosage can be increased up to 10 mgs per kilogram every 4 weeks.

I've heard of getting your blood drawn before the infusion. Usually I have to go elsewhere to another lab. Call and ask your doctor to see how they do it.

It usually takes a rather large weight gain to impact dosing, you should be fine. They'll weight you next time and adjust the dose if it is necessary.

Adjusting the Remi dosing and knowing if you are building antibodies are important steps. Insist upon it. The small weight gain shouldn't be an issue, although some metabolize it differently over time. Testing will help you/doc in assessing which biologic you can try next, surgery isn't inevitable. That said, if you do go that route, go into it as healthy as possible-this means keeping the flares under control.
As long as you don't have an underlying infection, don't be afraid of an Imodium or two to give you a break.

Ditto what Andrina said.