This Friday morning I am scheduled for my every 8 week Remicade treatment. Remicade aka infliximab is a immune modulator that is used to treat Crohn’s and Ulceratice colitis as well as many other types of auto-immune diseases. It is a humanized monoclonal antibody for TNF alpha made from mouse protein. TNF alpha is part of the body’s immune response system that causes inflammation. So, the idea here is that it shuts down your bodies faulty immune response that is kicking your own colon’s butt.. figuratively speaking of course. Remicade is given by an intraveinous infusion that takes several hours to administer. If you have UC or any number of other auto-immune diseases and have been treated by courses of steroids, you may eventually be prescribed this drug as a steroid sparing course of treatment because steroids will do bad things to your body if used long enough.
So what’s it like to get an infusion? I’ll tell you. I go to a local infusion center known as the Cancer Recovery Center (CRC). They like to group us remicade people on Fridays but usually there are some cancer patients there as well. All of us that are getting our infusions go back to a room with a bunch of reclining chairs with IV stands next to them. The nurses are friendly. They start sit you back, start an IV line with a bag of saline and then administer some Tylenol and a bag of IV Benadryl – just in case you have an allergic reaction – which luckily I have never had. At this point, they usually check my vitals. Not surprisingly, my bloodpressure is usually high at this point. So, I tell them that “hey, you just stuck me with a needle. Com back in 10 minutes.” When they check it again, it is usually ok. Once the Benadryl is in, out comes the bag of remicade. It is dosed by weight and they use a filter in the line – I guess they don’t want any chunks going into your bloodstream. I am getting the maximum dose – 10 mg/kg. We started at 5, then went to 7.5 and then 10 which seems to have the best effect. They start the drip out fairly slow – again to wait and see if there will be an allergic reaction. After some time, they’ll usually speed up the drip. It will still take about 2 hours for it all to go in. Don’t tell the nurses, but sometimes near the end of the bag, I crank my own IV up so I can get the heck out of there because I really don’t want to be there in the first place.
Going through the infusions is not fun. However, when I see what some of the cancer patients go through, I really feel that I am not so bad off. Seeing the cancer patients can be depressing and sad, though. I remember there was one fellow in there every Friday that I was there getting his chemo. He had stomach cancer. He always seemed up-beat and always was talking about what he was going to do with his family over the weekend. One day, I read his obituary in the news paper. So, while UC and Crohn’s are really no joke and can make you feel like your life is over, compared to some other things, it’s just a pain in the ass. I’ve been dealing with it for 12 years now and for the most part, I can lead a fairly normal life if there is such a thing as normal.
UC patient since 2002.