Tips for Your First Remicade Infusion

Good morning and HAPPY Friday to you!

Yesterday marked one year of Remicade infusions for me, so I wanted to share what a typical day is like when I get an infusion at the hospital. I also wanted to share some advice and tips for one’s first appointment since Remicade/infusions/hospitals can be kind of scary.

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Ok, so my day started out like most days: Oatmeal, iced coffee, and cuddling with Quinn on the couch. Then, I get him ready for daycare, drop him off, and drive home to take a shower. I get dressed, do a little bit of work, and then head into Boston for my Remicade appointment.

Tip #1: Give yourself plenty of time to get to your appointment. You definitely don’t want to be rushed/stressed out. Plus, infusion centers are typically pretty packed (at least the ones at MGH), so the nurses want to get you started ASAP, so other patients can get their treatments too.

I drive to a nearby T station, park my car, and then take the subway into Boston. I play on Instagram and sip water on the ride.

Tip #2: Make sure you’re good and hydrated for your appointment. It helps the nurses find your veins for the infusion and they’ll love you for it. Usually, the IV will go into your hand, but sometimes it’s done in your inner elbow. (I personally think the hand is more comfortable.) 

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I arrive at Charles/MGH with about 40 minutes to spare before my appointment, so I run some quick errands in the area. I cash some checks at the ATM, print some photos at CVS, and then pop into my favorite Whole Foods to grab lunch and iced coffee.

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Tip #3: Bring whatever you need to make yourself comfortable. Most infusions last 2-3 hours, so I often bring food and my laptop. I usually work during my infusions, but you can also watch TV/movies (on your laptop/iPad), read books, and sleep. 

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At Whole Foods, I order a pumpkin cold brew coffee. Thankfully, it wasn’t insanely sweet, so I really liked it.

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I also load up on goodies from all of the different salad and hot bars.

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I arrive at my appointment about 5 minutes early, check in, sign my life away (kidding – but I do have to sign something that bills my health insurance because Remicade is wicked expensive), and then I quickly use the bathroom before heading into the “infusion suite.” (The infusion suite is just a nice name for the room where the infusions are done. Some are big and open with individual chairs for patients; others are a little more private with curtains/dividers between patients. I was actually in my own private room yesterday because the infusion suite was so busy.)

Tip #4: Use the bathroom/do whatever you need to do before you have to sit still for 2-3 hours. Once the infusion starts, you can totally get up and use the restroom if you need to, but one of the nurses needs to unhook you and it just slows down the process. It’s not a big deal, but I like to get in and out as fast as possible.

Upon entering the infusion suite, I’m warmly greeted with a hug from each of the two nurses who run the suite. They welcome and say goodbye to all of their patients this way, which I think is the sweetest thing ever and definitely means a lot, especially during my first few visits when all of this Remicade/infusion/hospital stuff was new and daunting to me.

After that, I get settled in my chair. It’s a comfy recliner, and Cheryl (my nurse) offers me pillows and warm blankets. Oh, yes, the blankets are quite nice. Speaking of warm blankets…

Tip #5: Dress in layers and maybe even bring something warm like a sweater/sweatshirt or blanket. You never know what the temperature in the room will be and you want to be comfortable, so bring a little extra something with you. 

Then, she takes my temperate, blood pressure, and fills a bunch of vials with blood, which happens at the start of every infusion visit. The blood work checks for antibodies built up against the Remicade (if there are too many, it’ll stop working), liver and kidney function (both can be affected), and the usual suspects, like iron levels, platelet count, inflammation markers, etc.

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Then, it’s Remicade time. On your first visit (and possibly other visits – it just depends what your doctor requests), you might be given Solumedrol (a steroid) through the IV to prevent any sort of adverse reaction to the Remicade. After that, the Remicade drips down and through your veins for approximately 2-3 hours.

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I’m attached to the Remicade drip, so I can’t freely move around. I also can’t feel the Remicade going into my veins. It doesn’t burn or anything like that. The only way I know it’s going into my body is watching the Remicade bag slowly empty.

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Once the bag is empty, Cheryl flushes saline through the IV to make sure I get all of the Remicade into my system. This takes about 5-10 minutes. Then, the IV is removed from my hand. I make another appointment for 8 weeks out, give the nurses a couple of hugs, and I’m good to go on my merry way.

Remicade Day

Right after my infusion, I don’t feel any sort of immediately side effects. I drive home. I sometimes work out. On occasion, I’ll feel more tired than usual, but it doesn’t hit me until later in the day. Usually, I just go to bed early and wake up the next morning feeling totally fine.

Tip #6: Join the Remicade group on Facebook. (It’s a closed group, but just ask to join.) It’s really helpful and makes me feel not so alone when dealing with this disease. 

So, that’s what a typical Remicade day is like for me. Although, random side note, after my appointment, I got stuck in an elevator by myself for about 45 minutes. THAT was fun. The fire department came and everything! Ha! Anyway, if you have any questions about Remicade, just let me know, and I’ll reply in the comment section!

Question of the Day

Any questions about IBD? Remicade? 

Have you ever had an appointment with a registered dietitian? Was it helpful?

Have you ever been stuck in an elevator? 

38 Comments

  1. You got stuck in the elevator? Isn’t that everyone’s biggest fear? What the heck did you do? Do those call buttons really work?

    1. The call button didn’t work at first, so I definitely had a moment of panic. I also didn’t have my phone! Thankfully, it connected and someone was on the other end.

  2. What a great and honest post. I was very nice to to get a peek inside this. And i feel like you are so brave for sharing so much with your readers.
    And I actually ad regular appointments with a RD for a long time when I was in recovery for an eating disorder. It was very helpful.

  3. Thank you for this glimpse into your life with an autoimmune disease. I also am living with an autoimmune disease- Lupus. I was diagnosed almost 4 years ago. I am currently on Methotrexate (an immunosuppressant/chemotherapy), prednisone, and hydroxycholoroquine. It’s always good to read stuff like this and know you are not alone! 🙂 It’s also good to know that our autoimmune diseases do not have to put limitations on our life. I like to say to myself, “I have lupus, lupus doesn’t have me.” Good luck to you and I love the blog!

  4. Thank you for sharing Tina. I’m so happy to read that Remicade is helping you live a healthy life and its nice to read that even though its probably not the most pleasant hospital visit, the nurses make a friendly and welcoming environment. Sorry that you got stuck in an elevator. Do you think it was better to be stuck alone or would it have been better with a stranger? Guess it depends on the stranger!haha I have dreams about being in an elevator and it dropping, ugh, hate that dream! Have a good weekend!

  5. I met with a registered dietician when I was a competitive figure skater. I learned about eating for energy and how to fuel properly. It was really interesting!

  6. I love that you are greeted with hugs! We need more of that in the world. Buy a cup of coffee, get a hug. You know, hug all the people!!!

  7. i just wanted to say thank you for sharing your UC story. i had some GI issues that started almost a year ago and it wasn’t until this past June that i got a diagnosis of UC. i failed all other treatments (had maintained some sort of control on 30mg of steroids) and finally got on remicade. being able to read your experience and how quickly it worked really helped ease my mind. i go for my 5th infusion in december and can finally eat salads, mexican food, asian food, and run without the fear of having a dreaded accident. i am still fearful of random side effects- i swear my hands swell since it is hard for me to put on my rings at time and i am still having a very difficult time losing weight. i guess i just need to give myself time. thank you again for sharing!

  8. Thank you for helping people understand that Remicade doesn’t have to be scary! I have come to look forward to it–it is 2 hours of uninterrupted me time. I can work, I can sleep, and it is like getting the golden ticket to feeling better. So happy that you are doing well on it!

  9. Oh my god, just the thought of being stuck in an elevator has me sweating and nauseated haha! Definitely my worst fear right there. This was such an interesting post, Tina. Thanks for sharing and glad you’re doing well!

  10. So great your insurance covers the remicade! What a big difference that makes.

    I had some really bad experiences with traditional RDs when I first diagnosed with celiac who advocated eating a standard american diet which made me way worse. This is part of the reason why I ended up studying holistic nutrition instead of going the RD route myself. That said, I’m sure there are tons of fabulous RDs out there.

  11. Very interesting to learn about the procedure. I’m so thankful that I don’t have the need for it but I’m sure it can be a very scary thing for first timers. I need to go so if my Whole Foods has Cold brew coffee on nitro that sounds cool!

  12. Hi Tina! Thanks for this post!

    I graduated pharmacy school this past May and have been practicing since then as a pharmacy resident at a large hospital in CT. It’s really interesting to hear your perspective on the whole infusion process!! I haven’t dealt much with Remicade specifically, but I just finished a month training in the oncology unit (which I’m possibly interested in specializing in!) and it’s always interesting to hear different people’s perspectives on their treatments for such life-altering diseases. I’m glad you’re getting more used to the whole process!

  13. Your infusion experience looks lovely haha. Mine is in my doctors office, no infusion chairs, just the doctors table. After being infused somewhere else for my iron in a chair I asked my doctor to get with the times 😉 I LOVE my GI but it is definitely not comfortable.
    Minus that I agree I was a little apprehensive prior but after a couple times it is a breeze. I love remicade time, it has made me healthy again and an inexcusible 2 hours of me time.

  14. Now that you are a mom, do you find appointments like this oddly relaxing for some “you time”. My little guy is a love but keeps me on the go, so i have found the dentist appointments, a knee MRI, and an upper endoscopy (the prep and waiting part) to be so relaxing… pathetic in a way… maybe i need a spa day… haha

    1. Kind of? I go to Remicade on my work days, so I’m usually pretty stressed that I’m not able to work, but I’m really trying to enjoy the time away! Going to Whole Foods solo is always fun!!

  15. Hi Tina,
    I’ve been a long-time reader but infrequent commenter. I’m a nurse in a rheumatology infusion clinic and we give lots of Remicade, along with other drugs for various autoimmune conditions. I’m so happy to hear you’ve had a good experience overall and especially with your nurses! :o) We just love our patients and getting to see them make progress over time is so gratifying. It is truly incredible what these drugs can do. I am thankful every day for a healthy body and definitely don’t take that for granted. I hope it continues to go well for you!!
    Rachel

  16. Thank you so much for posting this! I met with my GI last week as my UC is flaring and Lialda doesn’t seem to be working anymore. Looks like Remicade may be in my future if I can deal with all the insurance paperwork and taking steroids again. I am so happy that the Remicade is working for you and that you are able to maintain remission.

  17. Thank you so much for posting this, and especially for the Remicade Facebook page info! I am on Remicade for Crohns and its so great to read other people’s experiences on it. Im a little jealous of your doctor’s office set up-mine is great, except for no wifi! #firstworldproblems
    Have a great day!

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  19. I love your site! I feel as though I have tried and been through the same fight with the Crohn’s/Colitis drugs and natural therapies. I am 31 years old, I am currently flaring and after trying SCD diet for a year without meds, the docs want me to think about starting on Remicade. I was petrified as I wanted to try and fall pregnant this year. After finding your site though I feel somewhat better about it and wanted to ask if you have any tips regarding diet and Remicade and also pregnancy? I know I need to improve on my fitness a lot but any helpful tips would be greatly appreciated. Love your photos also! Thanks 🙂

  20. Thank you for sharing. I have my first treatment in two days and I was wondering what to do/not do. This was very helpful!

  21. Thank you so much for sharing this. I was diagnosed with UC in March. Both Balsalazide and Apriso failed me. Long story short… they worsened my symptoms and I was unable to leave home for a month. My legs were so swollen I couldn’t walk. Ive been on Prednisone but I will be starting my infusions soon. I have been so scared and nervous about it. I get overwhelmed just thinking about it. This post made me feel more positive and less scared. I hope my experience with Remicade is as positive as yours.

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