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IV in hand

What An Infusion Is Like

So, just before I start this article, I wanted to mention that I have been on the Biosimilar Inflectra (Remicade equivalent) since April 2018. At first, I got infusions every 8 weeks, which then turned into every 6 weeks as I needed them more often. I’m allergic to Ibuprofen, so all anti-inflammatories are off of the table for me. Biologics were the first step of treatment for me, which I know isn’t too common.

I was so nervous

Before I got my first infusion, I was extremely nervous. I have anxiety about just about everything, so this was no exception. The days leading up to it were filled with crying, worry, and lots of Googling. I wanted to write this article to ease that worry of anyone that may be getting their first infusion soon or anyone who is even thinking of Biologics as an option.

A young girl sitting in a hospital with an IV placed

The first one

My first infusion was on April 4, 2018. It was at 7:45 am and that was a struggle in itself. My mom and I took the city bus over to the hospital, and my nerves were at an all-time high. Most of my worry was about the IV being put in my hand. I’ve never done well with needles going into my veins. Shots are absolutely no problem for me, but taking blood? Forget about it. I got bloodwork the first time I saw my Rheumatologist and it did not go well. I immediately went from the chair to the bathroom where I lied on the floor for about 10 minutes with almost no vision. Needless to say, I’ve now learned to take apple juice to every infusion and chug it.

The basics

The nurse always takes blood first, immediately followed by inserting the IV into my hand. I’ve found that the easiest thing is to 1. Look away from what they are doing, and 2. Take deep breaths. This seems to help the most, but sometimes the nurse may not know what they are doing as much, and I still feel like I might faint. But in my case, my veins are very small and they suck at giving blood. So that probably has something to do with it.

The nurses are always so accommodating and helpful, you can have a blanket on you if you’re cold, an ice pack if you’re hot. I always ask to be pushed back in the chair so my feet are up, and I’m basically lying down. You want to try to make yourself as comfortable as possible.

Getting going

Once the actual IV is into my hand or arm, everything is fine. For the first 3 infusions, you have to be there for a total of 3 hours. Two of which are with the actual drug flowing, and the last hour is with the IV out of your arm, and you just sit there to make sure you don’t have any bad reactions to the drug. The first 3 infusions are also closer together, mine were Day 1, then 2 weeks later, then 1 month later. From there on, they were every 8 weeks. Until this January, when I noticed I was getting flares more often, and we changed it to every 6 weeks.

Learning to love my time there

3 hours may seem like a really long time, but I learned to love it. It’s completely YOU time. You can’t get up (unless you have to go to the bathroom), you can get work done, listen to a podcast, scroll through your socials, with basically no interruptions. The nurses have to check your vitals every so often, but that’s no big deal. After the first 4, mine went down to 1 hour, and that’s a piece of cake.

I’ve had 10 infusions now. They definitely get easier as time goes on, and they become just a part of your life. If I’m being completely honest, I kind of enjoy them now. Once the IV is actually put in, of course.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lawrence "Rick" Phillips moderator
    2 months ago

    Steph, I have also had a port installed. I did it exclusively for the infusions I have for RA. It got to the point where they just could not get a vein that would hold up.

    They are a little bit of a pain and so cool at the same time. The PITA part is that you must be stuck at least once a month to keep it open. So I go in for about 15 minutes once a month for the push of heparin.

    The cool part is that once you have an infusion (the infusion counts for that month), it is fairly straight forward.

    I love having my port. I use Rituxan, so I go every four months for two infusions two weeks apart. If I were infused every month then the PITA part is not much of an issue.

    Regardless no matter how you move forward thank you for your story. I know I love having infusions. I have used infusions for almost 18 years and I always want to have infusions.

  • ASWarrior
    2 months ago

    Have you thought about getting a pic line or port? I had a port put in when I was told I needed chemo for stage 3 colon cancer. I’m a hard stick, as they say. They tried 15 times for my first colonoscopy. Now, it usually takes on the first time, unless someone new is doing the needle insertion. Gentle hugs

  • Lawrence "Rick" Phillips moderator
    4 months ago

    I have always done infusions of biologic medications. Except for a brief 15 months using Cimzia. I prefer infusions because I get to scan through my music catalog and since I sleep most of the time I love waking up to see what I listened too.

    I am glad you have found a way to accommodate the infusions. I also started with Remicaide and used that medication for five years. Like you, mine started at 8 weeks and ended up at 4 weeks.

    I hope it continue to work well for you but know this, the next medication is available when you need it. While I still think of Remicaide as my second favorite, I am thrilled there have been others on my 20 + year journey.

  • Steff Di Pardo moderator author
    4 months ago

    How was Cimzia given to you? I haven’t heard of that one before.

    I was almost going to go down to 4 weeks, but my Rheum. decided to try 2 cortisone shots for my hips and to keep me at 6 weeks. So we will see how that goes!

    Thanks so much, I’m just starting on my journey, good to know there are many options out there!

  • Lawrence "Rick" Phillips moderator
    4 months ago

    Cimzia, was a self injection monthly. I used it for RA so it may not be listed for AS. I was DX’d with AS in 2016/2017 and I have been using biologics for RA since 2001.

    When I used Remicaide it was only approved for RA when I used it.

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