Saturday, March 21, 2009

Remicade, Treatment 1

Not so bad! Arrived at 9:30 am and was done by 1:00pm. I guess the first treatment takes the longest...

Because Remicade is so expensive, the drug is not mixed until you arrive on the premises of the doctors' office. After Laryl, the fabulous nurse practitioner, set me up in one of the exam rooms (although you may have an entire Infusion Room available to you at your local hospital), she took my vitals (ie weight, temperature, blood pressure) and determined my treatment dose based on my weight.

She began the IV with a simple saline solution, began a VERY slow drip, and added the Remicade to the solution. Over the course of 2 hours, Lauryl checked on me repeatedly, monitored me for any allergic reaction, took my vitals and over time she increased the rate of my drip once she knew my body was doing well with it. Phew! A big thank you to Dr. Barry Ross and Lauryl for making this first infusion as painless as possible! It helps so much to be surrounded by kind, competent and passionate professionals...

How can you prepare for this infusion?

1. Eat before you go. You don't want to be uncomfortably hungry during the infusion.

2. Pack a bag of fun! You will be there for 2-3 hours or so, bring things to entertain yourself. Book, cards, Nintendo DS, DVD player, magazine, etc. OR prepare for a nap! This can be much wanted relaxation and meditation time. A travel pillow and blanket can make this a much cozier experience.

3. If you are on prednisone, I recomend bringing a snack! That can be a long time without food for those of us on steroids! I know I get ravenous!

4. Go to the bathroom before you begin but yes, you can use the bathroom during the infusion, you can roll right on in there. No worries. Just don't get tangled on your IV:)

Back up...What is Remicade?

Crohn's Disease is an autoimmune disorder. Our own body attacks our healthy tissue causing inflammation, particularly in our small intestines. Remicade is a biologic medication used to treat the inflammation before it occurs by blocking the actions of TNF alpha, a naturally occuring substance in our bodies (WebMD, 09). Many of the drugs we are familiar with when it comes to Crohn's actually treat the inflammation when it shows up. Remicade binds to the TNF alpha, preventing it from signaling cells to attack healthy tissue, before inflammation.

I chose to try this treatment because the typical pills and surgery just haven't worked for me. Like any drug, there are potential side effects, serious and sometimes fatal infections, so it is very important that you collect all of your information and ask lots of questions before making treatment choices.

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  1. Stumbled across your blog and some of your story is very similar to mine. It is nice to hear the perspective of another 20-something woman because it is definitely not something you can talk about with just anyone. You are spot on with everything you mentioned about receiving Remicade. Although I'm not on it anymore, it drastically changed by life for the better when I was on it and I hope it offers you some relief. Oh, and I love the title of your blog!!

  2. Thank you so much Ellen, I appreciate your comments! I hope you are doing well with your Crohn's.


  3. I've been taking remicade infusions for crohn's for over four years (diagnosed with crohns 7 years ago, currently 40). I don't know if I would recommend someone taking a nap having had the experience of someone crashing on remicade. I always bring an ipod for tv shows and music, a couple magazines (The Sun & Harper's) and a book. I get my infusions at short term care in the local hospital. I went on remicade because I had no luck with prednisone, 6mp, mesalamine, etc..

    - Ben (200 mg/azathioprine (imuran) per day, remicade infusions every 8 weeks).