Did you miss me ?!?

After 5 years in remissions due to Remicade ( from Pancolitis ), it's seems I'm flaring once again.

The last few months have been loose stools and two weeks ago blood on paper and mucous returned. The GI first thought it might be a fissue or hemmies, but nay nay, I'm pretty sure it's colitis.

Odd thing, the one things this time and last time have in common are babies. When I flared hard in 2009 my son was born and my wife and I had a baby girl last week. Suffice to say it's been pretty stressful.

Just wondering who out there came our of remission on Remicade after a few years of use?

I received a script for Salofax 4g Enema's that I pump in my butt everything as well as a a small joint before bed to help me sleep and keep the night sweats away.

Aside from the mornings, I seem to be managing. I mean, the AM are a couple movements with mucous, loose stool and some mucous. I also have a BM after each mean but at this point I'm not ( cross fingers ), running every 30 mins, or worse yet, 35-40 times a day like in 2009.

My hope is that if Remicade is failing, I can keep it in check through diet, VSL#3 etc... so I don't develop full full on Pancolitis again. I can probably manage with Proctitis and even left side colitis but my fear is that I'll have to get on another regime on Prednisone. Worst drug ever.

anyways, good to see the forum is still going. Lost of new info out there.

Welcome back! Although the flare, I am sure, is very unwelcomed.

Dikid is correct, I'd have you're antibodies to remicade checked (Prometheus labs anser ifx test, or labcorp's generic infliximab concentration levels test) done.

1.) If antibodies are present to remicade, you can offset that by increasing the dose (from 5mgs per kilogram to 10mgs) and/or frequency increased (from every 8 weeks to every 4). Other anti-tnf biologics (simponi and humira) are also available and switching is an option. Remicade is a lot more susceptible to antibody development than others, as remicade is part mouse protein, the others are fully humanized.

2.) If no antibodies are found, then you've failed anti-tnf biologic treatment. In this case, switch to entvyio which is an entirely different class of biologics.

Well it's weight based so they need to adjust the amount.
I think it's odd that the infusion center does not verify your weight each time.

Jratt said...
The only other things that had changed since 2009 is my weight. I'm up about 30 lbs since the start of Remicade and have no increased the dosage since then.

Remicade is weight dosed, comes in 100 ml/mg vials, so the vial is often the unit you/I remember. I receive 4 vials of remicade and at 5mgs per kilogram dosing, I can weigh between 60 kilograms (132 pounds) and 80 kilograms (176 pounds) and still receive the same amount of remicade vials. If I am outside of that weight range then it would be 3 vials, or 5 vials respectively.

As long as they're weighing you before each infusion then I'm sure you're fine.

Congratulations on your new baby girl!!!

If you are in fact failing remi, there's a good chance your GI will try you on another biologic so that's a great option, especially compared to prednisone IMO. Hope it gets resolved quickly for you!