Health

Beginner’s Guide: Infusion for Arthritis

Like many autoimmune arthritis patients, I am on a variety of medications. Some are pills, but my main treatment is an infusion. When I explain that I am on an infusion for arthritis, people are often confused. They don’t know what that means, they didn’t know that some arthritis medications are taken that way, they think I’m exaggerating, etc. I’ve gotten so many questions over the years – in person and online – that I decided to make this handy dandy beginner’s guide.

I’m going to try to answer any questions you have in this post, but if you have more or want a clarification, feel free to leave a comment at the end of the post per usual. As a reminder, I am not a doctor. I am simply someone who has had a lot of infusions! (2-4 a year since 2013.) When sharing medical information, I always cite my sources, and that’s no different in this post. I also always try to make it clear when I am sharing my opinion and my experiences. In this post specifically, I’m sharing what it means to get an infusion for arthritis, what to expect when you get your infusion, and what I suggest you do to make your infusion easier. Whether you are about to start an infusion treatment or you are curious about what this whole thing is, I hope that this post will help you.

In this post, arthritis patient and long-time infusion patient Kate the (Almost) Great shares her "beginner's guide" for getting an infusion for arthritis.

What It Means To Get an Infusion for Arthritis

What is an infusion? An infusion is simply a method of receiving medication. This is when an IV is put into a patient and the patient receives medication through that IV. The National Home Infusion Association says, “Diseases commonly requiring infusion therapy include infections that are unresponsive to oral antibiotics, cancer and cancer-related pain, dehydration, gastrointestinal diseases or disorders which prevent normal functioning of the gastrointestinal system, and more. Other conditions treated with specialty infusion therapies may include cancers, congestive heart failure, Crohn’s Disease, hemophilia, immune deficiencies, multiple sclerosis, rheumatoid arthritis, and more” (x).

How is this different from a transfusion? Great question! MedicoRx Specialty says, “Infusions essentially refer to when an outside substance is administered directly into the bloodstream, while transfusions refer to when the same substance, just from an outside source, is administered in the same manner” (x). So a blood transfusion is a transfusion because it is from a donation from another human, while an iron infusion is an infusion because it’s a synthetic medication made in a lab and not in another human’s body.

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How does this apply to arthritis? There are a whole bunch of medications for arthritis patients (usually autoimmune arthritis, or at least not osteoarthritis) that are received via IV. Some of them are medications that are only administered via IV, and some are medications that can be taken through injection or IV. As NHIA says, “It is prescribed when a patient’s condition is so severe that it cannot be treated effectively by oral medications” (x). I don’t fully get the science-y side of this stuff (which is why I cite so many other sources), but my understanding is that it has to do with how these medications are metabolized. For example, my reaction to Benadryl is very different when I take it in pills compared to when I’ve gotten it through an IV. It is much, MUCH stronger.

How is arthritis treated?

What are some types of RA infusion drugs? There are a whole bunch of infusion medications for different forms of arthritis, like rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, lupus, gout, and more. Some examples are Remicade®; Orencia®, which can also be taken through injection; Rituxan®, which is what I have been on for most of the last 7 years; Actemra®; Cimzia®; Simponi Aria®; Benlysta®; Krystexxa®; Stelara®, which can also be taken through injection; and more.

Some other quick infusion facts:

  • Infusion therapy does not automatically mean that a treatment is chemotherapy. A big thing that I’ve run into over the years is that people think that chemo is only administered through infusion (it’s not; there are also pills) or that if you’re getting an infusion, you’re getting chemotherapy (nope). I mean, I get iron infusions in the oncology department of MGH, and that doesn’t mean that it’s chemo.
  • If you’ve ever been in the ER, had an IV, and gotten fluids through the IV, you’ve had an infusion. IV fluids is the best, especially if you’re a POTS patient.
  • You don’t always have to get an infusion in the hospital! There are special infusion centers now, but you can also get them at home. I’ve gotten them in the oncology department(s), in an infusion center, in my rheumatologist’s office, and at home.
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What To Expect When You Get an Infusion for Arthritis

Before you get your infusion, you need to not be sick. And don’t try to get that past the nurses because they will take your vitals before they give you the medication, including your temperature. Why? Because infused arthritis medications are immunosuppressants, and not only do they not want anything to happen to you, but it is also a liability issue for whoever is giving you the infusion. If they give you your medication but didn’t check if you had a fever and then something terrible happens to you? You could sue them for giving you the medications. I have even seen people who had pneumonia a week or two prior be turned away for their infusions. So it’s worth a lot of hassle to call them beforehand if you’ve recently been on antibiotics just to clarify things.

5 items every immunosuppressed person needs

Like I said above, you don’t necessarily have to go into the hospital to get your infusion for arthritis. When you first start, you might need to, but regardless, it will depend on your rheumatologist and their affiliations. There are some infusion centers that you can go to, but it will depend on if your rheumatologist works with them. For example, when I lived in Nashville, I had a very hard time getting set up with an infusion center in Nashville because my rheumatologist was in Boston. Additionally, while you can probably do home infusions eventually, most doctors want you to do your first or your first couple of infusions at a hospital in case you have a negative reactions. This is a big precaution, as you sometimes won’t know how you respond to a medication until you start it.

If you have a fear of needles, definitely talk to your doctor beforehand in case they can do anything to help, as you will have a needle put it. It’s also good to talk to your nurse when you get there because a) they’re the ones who actually put the IV in, and they have the strategies to make it easier and b) your discussion with your doctor might not make it into the file. They also might be able to cover up the IV in a way that they can monitor it but you don’t have to see it.

If you are getting Rituxan and you have a uterus, you should know that they will probably take a urine sample to check if you are pregnant before they give you the infusion. That’s because there is a contraindication for pregnancy with Rituxan. It is incredibly annoying, especially because they often will do it even if it isn’t humanly possible for you to be pregnant, but it has to be done.

When you get your infusion, they won’t just give you your arthritis medication. They will frequently also give you IV fluids, and depending on where you’re getting your infusion, they may also give you steroids, Benadryl, and Tylenol. The Tylenol is almost always oral, but steroids and/or Benadryl might be IV or oral. When you first start getting infusions, pay attention to how you respond to each of these medications, both in the minutes after you take them and in the day after them.

How long your infusion takes will depend on a variety of factors. The biggest one is medication; I’ve never been on Remicade, but from what I’ve heard, it only takes about 1 hour. But my Rituxan infusions take anywhere from 3.5 hours to 6 hours. Another factor is if it’s your first infusion of that medication or your first one of that medication in a while. Another personal Rituxan example is that in September, I got my first Rituxan infusion in a year. It took 5-6 hours because, while it wasn’t my first one ever, it was my first one in a year and I didn’t have any in my system. I don’t know the exact medical reason for this, but my nurses told me that it was because they didn’t want to overwhelm my body. Another factor is how frequent your infusions are. One reason Rituxan infusions are so long is that arthritis patients frequently do 2 infusions 2 weeks apart every 6 months (so that’s 4 infusions a year).

My rheumatoid arthritis treatment + how I got there

How you feel after your infusion will depend not only on the medication, but also on the person. Many people feel pretty crappy for a few days after getting theirs, regardless of the medication, but you just had a bunch of man-made chemicals pushed into your bloodstream. Just from Googling side effects with a bunch of different medications, though, I can see that a lot of them have flu-like side effects. This is why most of the patients I know get their infusions on Thursdays or Fridays so they can recover over the weekend.

Something in particular to watch out for, though, depends on if you got steroids before your medication and how much. My first couple of years on Rituxan, the place I got the infusion at gave me 1-2 CCs of steroids … which meant that I crashed hard core 36-48 hours after getting the infusion. I mean intense pain and fatigue. It will definitely depend on how much you get, as now I don’t get more than 1 CC and while I get higher pain again around day 3 of recovery, it isn’t the in-a-ball-crying reaction that I had before. So if something like that happens to you, bring it up at your next infusion! They can probably give you a little bit less.

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How To Make Your Infusion Easier

Hydrate, hydrate, hydrate – Over the years, I have found that the one thing that makes infusions (regardless of type of infusion) and blood work easier is if I’m hydrated. I don’t know the science behind this, but I do know that if you’re hydrated it’s easier for them to find a vein, so it has something to do with your bloodstream. I have my infusions in the mornings, so starting at noon the day before, I start drinking a lot of water, and then the morning of, I make sure to have had at least 16 oz before the infusion. I do want to be clear that exactly how much “a lot of water” is will vary from person to person. Because of POTS, I have to drink 2-3 liters of water a day anyway, so I have to drink even more than that before an infusion, but I’m aware that to some people, that is an excessive amount. I would suggest drinking a bit more than you usually would – unless you barely drink any water at all, in which case aim for the recommended 8 cups of 8 oz and also you need to drink water!!! – and see how you feel when you get the infusion. Does it feel difficult during the infusion itself? Drink some more before the next one!

Reduce your caffeine the day of – Like I said above, they might give you Benadryl before your medication to reduce your chance of a reaction. If you’re like me, Benadryl makes you extremely sleepy. But if I drink too much coffee before I take Benadryl, it doesn’t always make me sleep. It is very annoying to be extremely sleepy but also unable to sleep. So I won’t have more than 1 cup of coffee that morning.

Wear comfortable clothes – You’re probably going to have a very comfortable chair, which is awesome. I’ve seen people go to infusions in work clothes, including a suit. But I don’t advise it. Rituxan infusions can be long, and I’ve spent over 8 hours at the hospital before between when I arrived and when I left. I don’t know if this is general good practice or just what MGH does, but in my experience, hospitals and infusion centers don’t start preparing the medication until the patient has arrived and got the OK from the nurse. So even if you take a medication that has a typically short infusion, like Remicade, you could be at the hospital for hours.

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Make sure you have everything you need – Definitely have a list of your medications, as many times they will go over that. You’ll also want things to do, especially if you are having a Rituxan infusion. I used to bring a whole big bag of things, but now that I’m 5+ years into this, I’m pretty much just bringing my computer and a book. I really don’t need anything other than that, especially if I sleep through the first hour or two. What and how much you bring will depend on how long you’ll be at the hospital, so definitely check that out beforehand. From what I hear, most Remicade infusions are around an hour, but I would ask your doctor directly about how long your infusion will take, regardless of what infusion you are on.

Including food – You’re going to be there for a little while! Make sure you have something to eat. I have had my infusions in 3 separate locations over the years and only 1 of them actually gave me the opportunity to order food from the cafeteria, so don’t rely on that. This is another reason to ask your doctor how long it will take.

Make sure someone can bring you home – When you are going in for your first infusion – in general or for that medication – it’s a good idea to have someone come with you, or at the very least pick you up. It is not a good idea to drive yourself home when you’re on a medication and you don’t know how you’ll feel afterwards. And it’s especially not a good idea if you react strongly to Benadry like I do! You made it this far; be safe getting home.

What has been your experience with infusions for arthritis?

Like this post? Check out:

Chronically Ill Tips: What To Do When a Doctor Isn’t Listening to You, Is Chronic Illness a Disability?, Problems from My Inflammatory Arthritis + How To Deal with Them, What You Need To Know about Arthritis

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3 Comments

  • Reply Nicol

    Having my first Remicade infusion this week hopefully, so thx for the information

    January 12, 2020 at 5:19 pm
    • Reply Kate

      Hope you were able to have it, that it went well, and that this was helpful!

      January 16, 2020 at 6:21 pm
  • Reply Alicia Bell

    I’ve been on Remicade for RA now about 5 years or so. It takes around 2 hours,unless I haven’t had one in awhile etc like you stated…then it takes about an hour or so. I receive it every 6 weeks,but there are other frequencies depending on the severity of your illness. Your blog post is a great introduction to infusion! Thank you for posting it!

    February 3, 2020 at 11:08 pm
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