Remicade question

Sounds fine to me. Most uc people are on Remicade plus an immunosuppressant (6mp, imuran, aza) simultaneously. This is to reduce the odds of your immune system developing an antibody to the remicade which would make it ineffective.

Yeah, both 6mp and remi increase one's odds of getting lymphoma, but we are talking really statically small numbers here. You need to put the risk and benefits of treatment with remicade into perspective. The odds of remi helping are good 60%+ of people initially respond well to Remi. The odds of a healthy person on the street (no meds, no diseases) of getting lymphoma is 2 in 10,000 (or 0.02%). When you add 6mp to the mix at uc dosages the odds of lymphoma increase to 4 in 10,000 (0r 0.04%). Add in 6mp and remi in at uc dosages and your odds of lymphoma increase to 6 in 10,000 (or 0.06%). So yeah the odds increase slightly, but still small enough that I don't loose any sleep at night, worrying about it.

The stats above are from the "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases" document from the Crohn's and Colitis Foundation of America:
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Thanks guys. Just came back from the docs....we're starting remicade. What sucks is I have to wait till mid Jan! That's crazy...really sucks, I'm just anxious to do something now. Hopefully I can hold off another whole month. :(

Why does it take so long??

I'm not sure of your situation but I had to wait a little bit before starting too because it had to be approved by my insurance but I also had to have the TB test. But I didn't have to wait a month, just about 2 weeks. Did you have the TB test yet?

My awesome persistent wife got them to push it so I can start on Tuesday next week! Excited and scared... I really hope this works.

I got a chest xray and TB test done today, so by Fri everything be ready.

My doc said he'll have me on remi for a year and do a scope, if everything is good I'll stay in longer. Not really sure what the long term plan is yet... If I respond to remi then I'll discuss what the long term plan should be.

Quick question...since the infusion takes between 3-4 hours...can you get up and walk around?

I can't imagine being able to sit there for 4 hours and not having to go to the bathroom...and I'm getting it at the GI's office and they only have one bathroom (unless there's more inside that I haven't seen...the one I always end up using is in the waiting room). Should be an interesting experience....

Remicade probably is the long term plan.

Sherry, perhaps that's the difference between getting your infusion at your GI's office (like I do) and a hospital.

I concur with what Gary said, expect Remi to be your longterm plan moving forward. As if you stop Remi, your body might develop antibodies and you may not be able to use it again.

Sounds like you are getting ahead of yourself. For now focus on Tues and your first infusion. Give remi 2-3 infusions and you should have a good idea on whether you are healing and improving in your symptoms or not. Uc is an unpredictable disease, so I wouldn't try to plan years down the road. Remi works for years and years for some, others not do much. I've given up on predictions related with uc, just try whatever is available to you, and take whatever punches uc gives you. Uc doesn't play fair, I've been hit below the belt on more than one occassion. And hey, any improvement is welcome, no?

I'm the type of person that also wants to know what the future will hold...I find it quite annoying they haven't come out with better meds than what they have so far....I'm likely going to be on remi too for this stupid fistula and to be honest I'm not thrilled about the whole remi thing myself (the reactions, the possible side effects, the hours it takes for the treatments, etc...) and although I've never been in full remission with my CD, the idea of possibly having a short one due to remi possibly helping my CD oddly doesn't excite me either...glass half empty...it's like being teased, yeah it may be a bit of a break from the way I've been feeling for decades but I see it as more of a tease than a break...only to end up sick again...very frustrating, all of it.

i always got mine done at my GI's office. it would go to the bathroom a few times during it because IV fluids go straight through me. was never a problem. i usually watched tv or read a book the whole time. i always had fun infusion buddies and a really cool nurse, so i didn't dread the infusions. i usually went at noon and was out of there around around 4/4:30. it was definitely an all day thing for me since driving took 2 hours.

i really hope it goes well for you!! i remember i slept the first night after the infusion and didn't wake up to poop.

I'm only in the office for 2 hours for my infusions. Your first one they will probably do at a slower pace to make sure you don't have any bad reactions.

Good luck to you, hopefully it'll work great.

I go for my regular infusion tomorrow. By my count, it's my 47th time. It takes me two hours flat at a private infusion center my GI uses. I usually have a private room so I can rest, read, listen to music or whatever I want. My Kindle is my companion.

I've never had an adverse effect, and in all this time I've only seen one other person who did. She had some shortness of breath. They stopped the remi, gave some IV steroids then continued the infusion very slowly. I understand she never had a problem with infusions after that one.

One tip: I hate being given Benadryl because it makes me sleep for the rest of the day. I normally take Zyrtec for allergy problems, so I just take that and two extra-strength Tylenol before I go in. I get to take the meds of my choice and it's a lot cheaper.