Remicade users, how are you doing?

Yes, a couple adolescent boys got lymphoma during the initial clinical trials for remicade (the only people who did). They are the reason remicade and all tnf-alpha blockers carry that warning and it applies to taking both remi and an immunosuppressive med simultaneously. As such, some doctors warn young men not to take both meds at the same time, that is take only remi.

Lr21 said...
Peety, Wow, no preemptive bathroom visits; that's great! How many infusions do you think it took for you to really feel good?

Canadagal, I am actually not doing too bad lately. I tried taking VSL #3 DS and it really messed me up; enough to where I was miserable in the mornings. Once I stopped that and started back on cortifoam things are improving.I will check on a double dose of remicade if things get bad though.

Minners, it sounds like we are in the same place regarding the time we have both been on remicade. As I mentioned, I am supplementing with cortifoam and that seems to be helping. I think the key is to keep an eye on things and not assume the the remicade is all we need.it sounds like you are also doing the same thing with the re-introduction of enemas. Hope it works for you.

I noticed a difference after the first infusion. On May 19, 2009, I did not need to poo that day for the first time in more than 20 years.

Embersglow, so sorry to hear that. Surgery is irreversible so it seems like a big leap. How about trying some if the other drugs first?
I know this can feel like a long endurance test and it's discouraging when each drug doesn't work (I've tried a bunch & failed). Will send good thoughts your way!

Well after my year of trying drugs/diets and continuing to lose weight, be malnourished, and anemic and dehydrated... and also crap my pants atleast 3 times a week. And my ER trips, stays in the hospital and the endless percocet I am dumping down my throat... I am quite happy with my surgery date being 29 days away!

If you had MY particular life for the last 12 months I can almost gaurentee you that your colon would be out already.
moderate to severe pancolitis diagnosis since day 1.

I may have lost all the battles... but I am winning the war!

Wish Remi could have been my miracle drug.
I encourage EVERYONE to try it! :)

I was misdiagnosed with Ulcerative Colitis 8 years ago, I was age 35. Now I've been diagnosed with Chron's Disease, but I've had all of the precautionary surgeries for U.C. A full collectomy, and artificial J-Pouch. They never gave me a shot at Remicade!! Is it even worth trying to get the infusions? I don't even have any of my large intestine left. I have bottles of asocol that I haven't touched. Pretty much trial & error now.

1dogma1 - yes! I think trying Remicade would be great.
If you are having persistent issues, Remicade could be just what you need. Asacol is a first line drug and may not do any good for you.

tooblessed- prednisone is a jerk. usually harder for side effects to go away the more you take it.
Also: hot flashes, yes! I had these with Remicade. but also is a common side effect of MANY drugs. When I was on zoloft it was really intense hot flashes and lots of sweat, lol.

i just posted in the other remicade thread but will post here too-- i just got my second infusion of remicade on wednesday and will get my third on july 2nd. i was hospitalized for a month (got out last week) with the most severe flare i'd ever had and it was either remicade or surgery (says the doctors). i chose remicade, of course. my symptoms are definitely improving, but not as dramatically as i would like... it is a slow healing process as others have said :). i'm just happy to be out of the hospital finally and working my way back towards living a normal life...wish it were happening faster though! i'm also tapering off of pred (at 40mg now), which my body never responded to, and i'm not sure if the side effects i'm feeling (major anxiety, muscle/joint aches, exhaustion) are from the pred. or the remicade. hard to say...

Sugarcrave-- i was just as scared/worried to start remicade as you. i'm pretty against the big pharma/western medicine corporate paradigm and have also read about all the remi side effects and have a hard time justifying it in my head due to my values. BUT i really believe in the body's ability to heal itself and, in my case and other's, sometimes it just needs some help with something big. for me, i look at remicade as a "rescue therapy," something necessary right now but temporary for me. when this flare (finally) calms down enough and i feel well and able, i will try to manage colitis on my own, naturally, without remi. if it doesn't work... well, i will cross that bridge when i come to it :) anyway, remember that this is your decision and your body and you have every right to say no to a drug if you are not comfortable with it. but also remember that you also have the right to change your mind and to do what you need to do to feel well and live your life. good luck! :)

It's been awhile since I gave an update on my progress with Remicade. I have been doing much better lately as long as I get up early and spend some time in the bathroom before I leave. When I know that I will be out all day, or I am doing something in an unfamiliar place, I will take a 1/2 Imodium just to be safe. Things aren't perfect with the urgency, but I know it's better than before I started remicade. My only issue is with hip pain that may be caused by the remicade or the Asacol HD. Does anyone else have this problem? Since I first posted this in February, how is everyone who is on Remicade doing? Hopefully it is still doing the trick.

Been on it two weeks just had my second dose yesterday. I think I felt better within a few days of the first- slightly more energy but still had pretty bad D. I had a colonoscopy just a few weeks before, and had moderate to severe pancolitis (this was from about a three-year flare, so I had some healing to do). Right now feeling pretty good, still have maybe only 30% semi formed stool, the rest is some form of D, but definitely improving. Just hoping things continue!