I started Remicade in the winter of ’07 and stopped in mid-’09. This is actually a really good drug for a lot of people and what I’m going to tell you is one man’s experience. I do not want you to think this is how everyone reacts to getting Remicade. Okay, so you probably know that Remicade is a ‘biologic’ that it is closely related to Humira and Cimzia in structure and function. That being said, not all these drugs behave the same for everyone and they all have different biological properties and reactions in different people. With that as my disclaimer I’ll walk you through a standard Remicade infusion day.
1. Inconvenience – So i’m a freshman in college, its Saturday morning and my alarm is going off at 6:30 am. It’s infusion day! It starts at 8 am and I have to be driven 30 minutes (one way) to the outpatient infusion center. I had a car then, but you aren’t allowed to drive on infusion days. And the reality is, after my infusions I was in no shape to drive. This got more and more annoying because my infusions were being scheduled with increasing frequency. The infusions also take a really long time, like 6 plus hours total. So whoever takes you is going to be parked in the infusion center with you for a while.
2. Pre-Remicade cocktail – Okay so we just drove our 30 minutes to the infusion center…. time for Remicade right? Well not so fast. To help prevent allergic reactions you are given Tylenol by mouth and Benadryl by IV. We’ve all taken Tylenol sure no problem, but the IV Benadryl absolutely rocked my world. Not only would it burn my arm and then spread to my chest (see Meds Quick Tips to learn how to decrease this) but it would knock me out. This reaction doesn’t happen to everyone but for me I would pass out and sleep through the entire infusion. You’re saying oh that’s great time must have flown by! Well yes time flew by but it wasn’t all sunshine and roses. I would wake up feeling hung over like you wouldn’t imagine. The only way I knew to get over this was exercising vigorously to sweat like a crazy person and then go to sleep. I think some infusion centers or doctors may allow people to take Benadryl by mouth but you will have to talk to your doctor.
3. Guilt- So my infusion just finished and the nurse is talking to me but my head is spinning because of the damn Benadryl. Now I started feeling guilty. Wow I would think, “that was like a 10,000 dollar process that made me feel terrible and I know isn’t going to make me feel all that much better.” I’m just that kind of person who is sensitive to the financial implications of something even if I’m not paying for it directly. There are several ways to mitigate the cost of Remicade. Look around online on forums and things and you will find people discussing how to make it work. My advice to anyone under 26 in the US…stay on your parents insurance as long as possible. It is probably much better then anything you are being offered or could afford.
4. My response or lack thereof- So now a week or two after my infusion you’d think I’d be feeling great right? Well meh not so much. As I have said, Remicade works for a lot of people but not for me. I was having to increase the frequency infusions because of symptoms and low drug levels in my body. I had blood, 7-10 BM/day with urgency and intermittent pain the whole time I was on Remicade. Not what I would call an optimal response.
Again this is one mans experience, for every one of me you will find five people who will defend Remicade (or any drug for that matter) tooth and nail. I hope this can start a conversation about Remicade and ways the process may be improved. Has anyone else had difficulty with Remicade like this before? Comment below!