On Wednesday night, I was tweeting with a new Twitter follower and now new iFriend – KatyKate about Remicade. She’d been on Enbrel and Humira before and was completely comfortable with administering her own injections, but was recently switched to Remicade. I could tell immediately she was scared about it. I mean, I was. (I was scared out of my mind because insurance companies classify the drug as “chemotherapy”. Oh boy!) As the chat went on, she included one of her other friends into the mix who is about to start on Remicade too. By this time, sparks were flying for a blog post (and if I’m truly honest, a “duh moment”).
Keep in mind, I’m not an expert. Not in any shape or form, but I’ve been on Remicade for 14 years and have had over 100 infusions! To put THAT into perspective, I received Remicade before it was FDA approved for ankylosing spondylitis and at the time only had TWO biologic medications available. The other? Enbrel which didn’t work for me. Friends, we’ve come a long, long way! But for the purposes of THIS post, I think 14 years of experience of going to the “Infusion Room” qualifies me to answer just a few questions. So, let’s get started!
“Can you drive home after?”
You can. And I do now. However, for your first infusion or until you get a good sense of how you are going to react, I would ask someone to either sit with you or drop-off/pick you up. You just never know how you’re going to react to this powerful medication.
“Do you feel ill after?”
Yes and no. When I first started Remicade, I would drive an hour and half to my Infusion Room on a Friday afternoon after my college courses. Once complete, I would go straight to Winter Guard practice. I would practice sometimes up to 6 hours with non-stop dancing and spinning large objects (flags, rifles, and sabers). I’d maybe get 6 hours of sleep, get up early, go back to practice for about 6 hours before our first competition that afternoon with the potential of another that evening. To top it off, I’d then go out afterwards to celebrate. The next morning I’d travel the 1.5 hours back to college. I did this for TWO years because I loved the sport. OK, and I was 18, 19, and 20. Dumb, young, and proud of it.
Now at the age of thirty, flirty, and thriving (I had too!) I go straight home afterwards because I almost always feel queasy. Once home, I work for a few more hours and then completely crash usually binge watching a TV program until I fall asleep. And I usually fall asleep early.
“What should I wear?”
Comfy clothes. Image you are stuck in a movie theater in shorts and a tank top and they blast the A/C! But you can’t leave because the movie is SO good. Like Harry Potter good. Well, that’s kind of how it feels when you’re getting your infusion. You are freezing internally because the Remicade medication is administered COLD. Oh and you can’t move for a minimum of two hours. Okay, you can get up and walk around, but you have an IV following you everywhere you go. For me, I wear layers. I suggest reading some of my “Infusion Outfit Inspiration” posts or even my Campfire Layers featuring ModCloth. I’m not ashamed to wear winter clothing in the middle of summer during my “Remicade Day”.
“Will I be bored?”
Two hours is an extremely long time to just sit there. You could take a nap but why not be prepared! Find out ahead of time either from your doctor or by calling the Infusion Room to ask what they have available. Here are a few items to ask:
- Do you have WiFi?
- Do you have a private sitting areas?
- Do you have snacks? Or do you provide lunch?
- Do you have heated blankets and pillows? At the very least do you have heated seats?
- Do you have private TV viewing?
- Do I have to pay for parking?
Keep in mind you and/or your insurance company are paying high amounts for this medication so don’t feel guilty for asking for “free things”. Everything listed above is available and free at my clinic. Actually, it’s been available at every clinic I’ve gone too (3 so far!), so always ask if this is something they could add to make your experience more enjoyable.
“Does it work?”
I would like to think so. 🙂 I’ve been on it for 14 years without any fusion, major side effects, and started to reverse the trend of how much medication I require. I’ve also maintained very active and healthy lifestyle to compliment the drug. Especially as at the time, I was on my last hope of any relief. I took it in my own hands to make it last as long as possible.
I also like to think it works because most people who don’t know me, and therefore don’t know I have arthritis, think I’m a healthy young woman. For me, I mostly consider myself lucky.
What would you add to the list?