I will never forget my first infusion of Remicade. I was so nervous the day I found out I was going to have to start a treatment plan and I was very nervous the night before my first one. Not too much has changed since COVID but there are some key differences worth mentioning.
I have been to several different infusion clinics. From my experience, they are located in a medical building and are attached to a doctor’s office. The doctor is supposed to be present just in case there are any adverse reactions. Your infusions will be scheduled weeks apart. I get my Remicade infusion every 6 weeks. Some people go every 7 or 8. It just depends on the activity of the disease and what amount is required to keep it under control. If you are in a lot of pain a couple of weeks before your next infusion, tell your rheumatologist. Your medication should last until your next dose. Maybe you need to increase the frequency. There are limits though. Me being at 6 weeks means it is as often as I can go. So if I’m stiff before the next infusion, I have to deal with it or if it’s not tolerable, look for other options. My rheumatologist prescribes Celebrex for when I’m having a flare up or worse pain than usual. I often use cannabis when I’m having a flare up because I have a liver disease and prefer to limit my usage of pills if possible.
It’s best to arrive to the appointment hydrated. I make sure to drink water the night before and the morning of. That way the nurse can easily find your vein for when he/she hooks up the iv. I have small veins that like to run away so I will do anything to make the nurse’s job easier. Pre-Covid, I would’ve brought my tea with me and maybe even a snack but nowadays you have to wear a mask and can’t bring anything in to eat or drink. I recommend wearing loose clothing and a sleeve that is easily rolled up or a t-shirt so your arm is easily accessible. My go to clothing for an infusion are lululemon pants, a black shirt and my roots cabin long sweater that I sort of wrap over top of me and my iv. Otherwise you can also bring a blanket. For whatever reason, I find it cold during my infusions and a blanket can be very comforting, If it’s your first infusion, you will be there for over 3 hours as they have to observe you and they also set it to drip at a slower rate. Don’t worry, this will get better. I get my Remicade infusions in an hour and am in and out in 1h30. I also wear my moccasins or a pair of slides. You have to weigh yourself when you’re there and I like to remove as much weight as possible before stepping on that scale. Good for you if you just hop on that scale with your shoes on but I’m not that brave. You will sit in a recliner as well so you may just want to kick off your shoes and relax. You won’t be alone. There will be from 2-3 other people in the room with you receiving the same infusion or something else. I’m sure there are clinics that have more people than that but I’ve had at most 4 other people with me. Most clinics will ask you the following questions:
1) When did you last see your rheumatologist?
2) When will you see your rheumatologist next?
3) If you don’t do blood work with them, they will ask you when you last had blood work done. I get my regular bloodwork that is usually required from patients on Remicade at the time of my infusion. The iv is already in and why not take advantage. If your doctor can arrange this, do it! One less appointment to worry about.
Next, the nurse will prep your arm to hook up the iv. Don’t let him/her go into your hand unless he/she really can’t find a vein in your arm. It’s also a really good idea to alternate arms in between infusions. It shouldn’t take them multiple tries. Does it happen, yes, but it really shouldn’t. I’ve gone home before with my arm extremely bruised not realizing what the nurse had done because I tend to look away when the needle is being put in. Don’t be afraid to self advocate if you do end up bruised or you want someone else to try. It’s your body and you need to take control. Many of us are too afraid to say something and I’m here to tell you, say something. I’ve even requested a specific nurse for my infusions because she seems to just get my veins. Getting an infusion can be stressful enough. Do whatever you need to do to make yourself comfortable. Also, make sure when they clean your arm with alcohol, the next thing that should go in is the needle. Don’t let them touch your arm with their latex gloves again and find the vein. If they do that, kindly ask that they clean your arm again. Why am I telling you this? I ended up with a septic hip in 2018. They aren’t sure where I got sepsis from but the only place that made sense was my infusion. My infectious disease doctor told me to do exactly what I just told you. Can it be uncomfortable to tell someone how to do their job? Yes. Sepsis is uncomfortable too. Trust me.
Once the infusion is done, you may be able to leave (not on your first time) by signing a paper that states that you preferred not to stay for observation. Before Covid, some people would bring a loved one with them who would sit with them throughout the infusion. We are no longer allowed anyone with us. Maybe you’re wondering if you will need someone to drive you home? I personally drive myself but I have been on Remicade for years. I would have someone drive you to and from the appointment if it’s your first infusion because you don’t know how it will affect you. I start to feel tired a few hours after my appointment and I’m usually out of commission that evening and for the next day to 2 days. I feel very tired. My legs feel heavy. I may feel nauseous. When I was working full-time, I would take the next day off to recover. If you’re able to do that, I highly recommend it. You won’t want to cook so either plan ahead of the infusion, don’t be afraid to ask for help, or spoil yourself and order in.
Don’t worry. I know my post may be a lot to take in but your infusions will become routine. Everything will become predictable and you will develop a level of comfort with your treatment plan. The hardest thing for me during my health journey has always been the unknown. Hopefully you have some more insight into what your infusion may look like and you can take some comfort in that.
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