Ready for Remicade?

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.




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allergic, autoimmune, benadryl, inflammation, infliximab, Remicade, steroids, TNF, UC

11 Responses to Ready for Remicade?

  1. Adam
    Adam April 30, 2010 at 8:27 am #

    Paul, Good Luck today with your infusion. Don’t be doing any Karate Chops on those nice nurses now at the infusion center!

  2. Paul April 30, 2010 at 10:39 am #

    Thanks, Adam. It went fine – I was out the door by lunchtime and the nurses were so nice. I told them so too.

  3. Paul May 1, 2010 at 2:07 pm #

    Day after infusion and man, that stuff works quickly.

  4. DavesNinja March 11, 2011 at 6:49 am #

    Karate Paul! I’m so glad I found you on here! I saw your website and I’m a student of Shotokan Karate as well. I was just diagnosed with UC and it’s frustrating not being able to work out like I have in the past… but I’ll get there!

    • Paul Willoughby March 11, 2011 at 7:37 am #

      Davesninja,
      Osu! Best of luck to you. You’ll eventually find a way to work around the UC and still do most, if not all of the things you want to do. As Okazaki sensei always tells us, keep training!

      Paul

  5. Jessica June 18, 2011 at 8:51 pm #

    This was so helpful and informative! Thank you for posting this, as I will be getting my first dose next week. After my first infusion, I am to be receiving the rest of them in my own home. I’m not sure yet which will be more comfortable. I have 5 noisy little cherubs living here. I hope my kids can be calm for me. It’s only a few hours at a time, right?!

    • Paul Willoughby June 19, 2011 at 9:27 am #

      You’re welcome, Jessica. I hope everything goes well for you.

      Paul

  6. DAVID REYNOLDS September 12, 2011 at 4:24 pm #

    SO IM JUST WAITING FOR MY TEST TO CLEAR TO START THIS TREATMENT, THERE TELLING ME THIS WILL PRETTY MUCH COMPLEATLY CURE ME ME OF U/C? IS THIS STUFF AS GOOD AS IT SUPOSE TO BE?

    • Paul Willoughby September 13, 2011 at 4:07 am #

      Hi David,
      how well it works varies from person to person. I was hoping it would be the silver bullet that would kick me into remission but that is not the case. It does, however, help A LOT. I am getting an infusion this Friday and I can tell right now that I need it – more frequent trips to the bathroom, blood, etc. So, come on Friday. I’ve talked to people who have gone completely into remission on remicade so I hope that is the case for you.

      Best wishes,
      Paul

      • david reynolds September 13, 2011 at 3:24 pm #

        Hey, thanks for the info, went to my doc today, i had alot of questions about this treatment for him, alot about the side affects of this drug, are you having any? I keep reading on all theses sites about hair loss, joint paint, skin problems, my docs saying they are far and few between in his practice,they have a nurse come in and do the treatments every week and he swears by remicade, He says it could compleatly heal me!!! but what i keep reading im not quite as sick as most,thank god!!! im just concerd about the side affects. thank you again its good to talk to someone thats going threw with this!!

        • Paul Willoughby September 14, 2011 at 3:42 am #

          David,
          I have been getting remicade infusions for 4 years and the only side effects I can directly attribute to them are two skin infections that required anti biotics to treat. I have also developed an excema type skin conditions that my GI doc said could be caused by the remicade but the dermatologist said that it could also be part of my inflammatory disease. Anyway, it is treatable with a cream. The one side effect that sticks in my mind is the increased risk of lymphoma. If you fall into that percentage, you won’t know it for a long time. For me, I was sick enough that the risk was worth it. Your doctor could be right – it could put you into remission so it is worth a try. Just remember, YMMV (your mileage may vary). Definitely worth a good try though. Post your results here to let us know how it works for you.

          Paul

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