Remicade effects seem to wane

I recently began remicade...kind of against my own free will...My last flare took a quick and deadly turn, and I found myself hospitalized and 40 lbs underweight. Within a matter of weeks I went from seemingly healthy and managing to an emaciated bag of bones. I reluctantly agreed to begin remicade in the hospital in Jan.

I have made it through the initial dosing phase (week 0,2,6). I am still experiencing diarrhea...it’s a strange smelly, liquidy, Brown diarrhea that I have never experienced with my Colitis flares. And I’m going 3-4x a day, often waking up (once) at night.(Better than 10-12x a day, I know) What really concerns me is that about 1.5-2 weeks following my remicade infusion I begin to see blood in my diarrhea again. I initially chalked it up to the fact that I was very early in my treatment. Now it is going to be 2 months before I receive my next dose of remicade and I’m not so sure that this is normal. I spoke with my doc, but I was experiencing some serious problems with hemorrhoids and a fissure and he chalked up bleeding to that. I believe he was right at the time, but now I am seeing a change. This bleeding I have witnessed seems to be in conjunction with my bms and is similar to what I recognize as being Colitis like symptoms.

Any experienced remicade users that might shed some light on this? Should I be worried that remicade is not effective for me? Should I be more patient?

Additionally I am anemic (never happened before with previous flares)...I have had minimal success with iron infusions...The return of bleeding worries me that anemia will never be resolved.

If you are indeed waning between treatments then:

1.) The dosage can be increased from 5mgs per kilogram to 10 mgs per kilogram.

and/or

2.) Frequency of infusions decreased from 8 weeks to 6 or 4 weeks.

There's a remicade serum trough (minimum) and antibody blood test that can be run to verify if you have enough remicade in your system. Prometheus labs originated that test and still charges a fortune for it. It's also availabke as a generic from Labcorp and other labs.

Are you on any other medications for UC other than remicade?

Testing for the Remicade levels and adjusting frequency makes sense.

That iron infusions are not fighting anemia is also of concern. You might ask for referral to hemotologist to see if there is some reason your body is not using the iron to make red blood cells. It is hard to bleed so much that an infusion of iron does nothing for anemia.

good luck

I plan to talk to my doc regarding dosage and frequency...I wanted to make sure that this wasn’t just something to be expected at this point in the game.

I have an appt with a hematologist this Monday...I had asked my GI doc over a month ago if I should see one, he blew me off...I’ve been tachycardic since early Dec due to anemia, we are now going on March...i was given prednisone with no proton-pump inhibitor until I complained of epigastric pain....I have been concerned regarding a stomach ulcer.

I have never been anemic in the past even with serious flaring. My bleeding and inflammation has been greatly reduced since early January, I feel like the anemia should be corrected by now.

Entyvio, stelara, or xeljanz would be your other biologuc options. Humira is unlikely to work when remicade doesn't (very similar meds).

You don't list immunomodulators (azathioprine/imuran or 6mp) under your meds. Add that to biologics!

UCFF, back in 2004, I was finally put on Remicade 10mg/kg (for crohns) every 6 weeks. Within 6 months we changed my infusions being every 4 weeks. It made a huge difference too. At the time my dr was considering doing them every 2 weeks to kick start things.

Hope you start feeling better.