Starting Remicade tomorrow... thoughts?

A quick history:

June 2011: First flare up, controlled by mitigating stress, going vegetarian, eating soups and salads.

June 2012: Second flare up, first serious symptoms and major weight loss (175-138lbs). Diagnosed Pancolitis

July 24th, 2012 during first hospital stay. Put on high doses of prednisone. Tapered too quick, between the salofalk and the tapers of prednisone found myself not responding.

October 2nd, 2012: Second hospitalization, IV steriods, left after 5 days and slowly improved with a slow taper/stepup/taper regimen of prednisone.

Jan 2nd, 2013: Off prednisone, just on the salofalk. A bit poofy at 170lbs, by Feb trimmed to 160, playing hockey, still dealing with urgency issues and making stool 5-10/day... bits of tissue in stool, but mostly solid stool - at least getting by. Secretly wondering if I'm slowly regressing... but trying to pretend like it's all good. Eating a lot of quinoa/bean/spinach salads with various vegetables and goat cheeses. Eliminated sugar from my diet and minimizing lactose.

March 8th, 2013: Big plans to fly back to BC and travel, a night of drinking (like an idiot) and big time bloody bowel movements for the first time since like, October. First time I didn't sleep through the night in a couple months. I go to BC anyway, the trip kicks my ass, and I wind up back home ten days later.

April 2nd, 2013: Check myself into the hospital, dehydrated, exhausted, having been on 35mg of prednisone for 2 weeks with no response and feeling like an old man.

April 9th: Had a sigmoidoscopy today to see the extent of the damage and it was considerable. I've never seen my colon this ugly before. So - the question is, the doctors want to put me on remicade. What do you folks think?

I've been in the hospital a week less a day now, and my bleeding has subsided quite a bit, and the cramps have slowed over the last couple days. The thing I want to avoid is going back on prednisone again. It's been almost a year and I'm a very active guy. I can't be getting osteoporosis. I know about some of the risks of remicade, but the doctors haven't been totally forthright with me or given me much to read about the drug... I get how it's a hormone inhibitor, that hormone being one of the arms of our immune system that causes inflammation, the antibody is made of human and mouse proteins, and that it acts as a blocker for TNF alpha. What I don't know is how increased my chances of getting lymphoma are as a result of being on this drug. My uncle died of lymphoma last year. So it's a concern. I don't want to sell myself out longterm to get better in the short term, but at the same time I know I need to get my symptoms 100% under control for a period of time to get that colon healed so I can start trying new things like a raw food diet or making my own yogurt.

Any thoughts would be much appreciated. Looks like they want to inject me with this stuff tomorrow/thursday so any feedback before then would be much appreciated. I'll be monitoring the thread.

Thanks!

Kenny

PS. What would you be if you cut off your left side?

You'd be all right.

It's not really a hormone inhibitor, or at least I wouldn't call it that.

Remicade is an antibody against TNF-alpha, which is a molecule involved in signaling that induces inflammation. The antibody neutralizes the molecule, which reduces inflammation. The whole "human and mouse protein" bit is a bit harder to explain; it's not entirely irrelevant, but it's more about how the antibody is produced and less how it works.

I'm dealing with some serious UC fatigue today (brain no worky), and it's been a long time since my immunology/inflammation coursework, but in terms of the lymphoma risk, it's a very rare side effect that is not necessarily related to family history. There are also so many kinds of lymphoma, it's hard to say if the one your family member died of is even related to the one that's a possible complication of Remicade.

What IS important is that lymphoma as a complication is very rare, and it sounds like you're in desperate need of something that will help! I did very well after my first Remi infusion, and while I've plateaued, I definitely feel like I'm going to make it to remission, just not yet. I also am reasonably sure that my fatigue is from 6MP, another drug I'm on to increase the effectiveness of the Remi. I am probably going to try to go off it, since I can hardly get out of bed.