16 Things I Take to My Infusions for Ankylosing Spondylitis

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When I began receiving infusion treatments for Ankylosing Spondylitis I had no idea how to prepare for my appointments. What do I bring? What do I wear? Do I need a ride?

Now, well over a year of regular infusions later, I often tell people that infusions are my favorite appointments because I actually feel like a patient. All I have to do is show up and be treated; I don’t have to steel myself for a consultation, review medical records ahead of time or expect to receive a new diagnosis or a change in medication. I just show up, get poked with a needle and catch up on emails or Facebook until I fall asleep. Minus the awkward IV pole, it’s the perfect SpA treatment (all you Spondyloarthritis folks got that joke, right?).

Here is my list for infusion days:

Remi-cade
Image is of a light-skinned person sitting next to an IV pole receiving an infusion in their right arm. They are holding a stuffed sloth in their left arm and looking at the camera.

1. First things first, my go-to infusion partner is a stuffed sloth named Remi (short for Remicade). Remi’s been through the wash a few times, so their once-soft, fluffy fur is now course dreadlocks! Remi is comforting to hold when I get drowsy towards the end of my infusion.

2. Warm socks or slippers – I actually bring both. Infusion centers are often cold and the below-body-temperature medication chills me even more when it flows through my veins. I slide on the slippers when I go to the bathroom so my socks aren’t the only barrier between the floor and my feet. I also try to wear shoes that I can slide on easily at the end of the appointment to go home when I’m groggy and less agile.

3. Laptop or tablet – I like to have something to do during my appointments. I’m an introvert and often don’t feel up to talking with other patients, so I catch up on emails, read an online book, browse Facebook or watch videos.

4. Cell phone charger or portable battery – There are usually plugs in infusion centers, but not always. I often find myself texting with someone I haven’t talked to in a while and I like to have plenty of charge just in case I locked my keys in my apartment (again!) and need to contact a friend with a spare key!

5. Eye mask – I often get drowsy and take a nap towards the end of the appointment. Anything to keep out the brightness of those fluorescent lights is welcome!

6. Earplugs or ear buds – All the beeping machines and various noises of an infusion clinic can get annoying, though I’ve grown accustomed to a lot of it over time. Earplugs can block out some sound but ear buds are helpful if you plan on listening to music or watching movies or even making a phone call.

7. Blanket – Most infusion centers will have those amazing heated blankets available but I get colder than most people I know, so sometimes I bring this sherpa-lined blanket with sleeves. The loose sleeves allow enough room for the IV and tube to be accessible if needed. I have also been known to ask for not one, but two, extra heated blankets instead of bring my own.

8. Comfortable clothes – I dress like I’m going to a pajama party. I even sometimes wear actual pajama pants. Infusions are where I consider myself being pampered and I want to really feel like it! I usually wear short sleeved shirts or long sleeves that are loose enough to push loosely above the elbow. This makes it easier for IV access.

9. Arm sleeves – I recently found a pair of arm sleeves I used when I was a runner and realized they would be perfect for infusion days. My arms always get cold, but an arm sleeve can be worn on whichever arm is not being used for the IV and the other can be folded and used for half the other arm, still allowing IV access.

10. Water bottle – My infusion center offers small juices and water during infusions but I feel selfish if I ask for more than a few per infusion. I bring my water bottle full of water so I can hydrate throughout the appointment. I have learned how important it is to hydrate before, during, and after infusions; the times I have not done so I have developed a migraine the following day.

11. A hat – If you’re someone like me with short hair or a bald head – or if you get cold easily – wearing a warm hat can help retain some body heat. I love wearing my “I’d rather be writing” beanie because it’s long enough to pull over my eyes when I get sleepy.

12. A friend – I am always delighted when someone I know wants to come sit with me during infusions. I don’t always want to talk but sometimes it’s nice to catch up in a relaxed environment. It’s also nice to just sit next to a good friend and be quiet together while we do our own thing.

13. A book – Maybe it’s a memoir, or a romance, or a textbook, or a swear word sloth coloring book! Books are always in style and the perfect tool to help you lose track of time and enter another world for a while.

14. Knitting/crocheting/needlework – I haven’t yet taken my knitting to an infusion but I hear from a lot of people who do. My little knitting bag is packed and ready to go just in case.

15. Assistive device – I know I will be drowsy after infusions so I always pack my folding cane in case I feel unsteady on my feet on the way out.

16. A ride home – Infusions make me drowsy so I always plan a ride home in advance.

What did I miss? I would love to hear what you bring to your infusions in the comments below, especially if you have a port.



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13 thoughts on “16 Things I Take to My Infusions for Ankylosing Spondylitis”

  1. Hi Charis! I just got diagnosed with AS yesterday, and I’ll start Remicade infusions soon. Thanks so much for the helpful info 🙂

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  2. Hi Charis, I enjoyed reading your blog. My husband has been diagnosed with AS and has also been getting Remicaid infusions. I just wanted to give you a tip: If you use a brush on Remi’s dreadlocks, he will likely become soft again and almost like new! I used to do this when I was a child with my favorite stuffed animals. We always bring a card game with us for my husband’s infusions.

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    1. Thanks for the tip, B. Duncan! Unfortunately I believe Remi’s dredlocks are beyond undoing, but I think that gives the darling animal character. 🙂
      Card games sound like a great addition to the list!

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  3. Hi Charis. I’ve never experienced an infusion but enjoyed reading your tips. I’m on Consentyx right now for my AS. I’m hoping it’ll give me better relief than the humira and enbrel. If I ever move onto an infusion medication I’ll remember your tips. Thanks for sharing!

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  4. I usually try to bring a snack — something to help fill my stomach in case I need to have labs done after the infusion. Sometimes the infusion can make me queasy and I need to make sure the labs go as smoothly as possible 🙂 I love the arm sleeve idea! I am usually freezing during infusions!

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  5. Hey Charis. . We met at lunch during the San Francisco A.S. seminar in November of 2015. I enjoy your blog. How long does it take to receive an infusion?

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  6. Hello! I receive a Benlysta infusion every 4 weeks for my lupus (SLE). Usually I wear comfy clothes and shoes that are easy to slide on and off. I’m warm-natured but my feet will still get cold so I wear warm socks. I take a book and my cell phone for entertainment. Just a little tip, hardback books are easier to read with one hand than paperbacks because they will stay open on their own. I also take water and a snack. My mother is an angel and drives me to and from most of my appointments. I don’t have a port but am contemplating that option for when/if my veins become uncooperative! It’s good to have options. 🙂

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