So, you’ve been prescribed an infusion medication. Maybe a Remicade infusion (infliximab) or Entyvio (vedolizumab)? Or one of the dozens of other infusion therapy medications. At this point, you may be feeling defeated because other treatments haven’t worked. You may be feeling optimistic or even cautiously excited that this may finally be the treatment for you. Either way, you are probably also feeling nervous, maybe even a little scared. After all, infusion therapy is new to you and may well be more invasive and carry more potential side effects than any other treatments you’ve had.
Hopefully, this post will help with some of that anxiety. I have lost count of the number of infusions I’ve had, and I’m here to walk you through the whole process.
Lets get started!
(PLEASE NOTE: the information in this post is based on the experiences of myself and those I have consulted within the online community. It is not exhaustive and your experience may differ. I am not a doctor. This post is supposed to be a general guide only. It will apply most specifically to those who take Remicade (infliximab) or Entyvio (vedolizumab) and live in the USA.)
How To Prepare Effectively
Hydration is crucial when preparing for an infusion. Certain infusion medications contain a high protein content (see: medicalnewstoday.com and rxlist.com ) and the body requires a lot of water to process it. Making sure you are well hydrated the day before and the day of your infusion helps the metabolism process and means you are far less likely to develop a dehydration headache during (or soon after) the infusion.
What To Take With You
My infusion therapy appointments have lasted anywhere from 1 – 3 hours. That’s a long time to be stuck sitting in a chair! Although, some clinics/centers have massage chairs – make the most of that! There are a few things I like to take with me to make the time pass more enjoyably.
First, one or two forms of entertainment. I like to take either a book or magazine and my phone (and headphones) that I can stream tv on. Other ideas include Gameboy/Switch, tablet/laptop, and music.
Second, I also bring a snack as infusions always make me super hungry! Some places will provide snacks for you, but I still take some just in case! I also take a bottle or two of water to help with hydration without having to ask the nurses for water every two minutes.
Lastly, you may also want to take a blanket with you. Infusion therapy makes a lot of people feel cold. You are in a cool, often sterile environment, getting cold liquid pumped directly into your arm! The location you get yours administered at will have blankets available, but I know some people who like to bring one from home as it makes them feel cozier and more secure.
Possible Infusion Therapy Locations
Hospitals are a fairly common location for infusion therapy. A benefit of having your infusion in a hospital is that you are far more likely to get a bed to relax in. At an infusion center or specialist clinic, you will probably only get a chair. Just FYI, infusions are often administered in the cancer ward of hospitals – this does NOT mean you have cancer! It is just because there are similarities between the medications. And, that part of the hospital is most likely to have the required facilities and equipment to hand. Please don’t panic about this.
Infusion centers are facilities designed especially for the administration of infusion therapies, including medications, iron infusions, and blood transfusions. They treat people with all kinds of medical conditions. They may be a stand-alone facility or a separate building that is part of a hospital complex. These centers are often (though certainly not always) the most ‘luxurious’ facilities for infusions as that is their sole purpose.
GI or Specialist Clinic
Another possible location is at your Specialist’s clinic. For example, I get my infusions at my gastroenterology clinic because I get them to treat my IBD. Other such specialists include rheumatologists. At specialist clinics, the infusion area will be part of or attached to the regular office. The advantage of this setting is that you will already know at least some of the staff there and won’t have to find/remember a separate location.
The final location that you might receive your infusion therapy at is in your own home. In this instance, a trained infusion nurse will bring all the required equipment to your home and stay with you to administer/monitor your treatment there. It is unusual to have your first infusion at home. Most likely, you would switch to home infusions after you have received your medication a couple of times with no reactions or adverse effects – if that is your insurance/prescriber’s preference. The obvious benefit of getting your infusion at home is that you don’t have to go anywhere, and you have all of your entertainment and comforts right there!
The Infusion Process
When you arrive at your infusion center or facility you will need to check in with a reception of some kind. This often involves filling in paperwork about recent symptoms and medications. You may be issued with an identity wrist band at this point. This is where the waiting begins – maybe try some destressing techniques now if you are still freaking out! You don’t need to freak out – I promise!
When you are taken back to the infusion area you will be shown to your chair/bed. Next, your nurse will ask you about things like active infections, current medications, and any allergies you have. He/she will also get your vital info like your temperature and blood pressure. All being well, pre-meds such as steroids or Benadryl (oral or IV) will most likely be given now too. Most infusion medications take a little time to prepare, so your nurse will go to get it ready while you are receiving the saline. A good nurse will probably offer you water, snacks, and a blanket. If they don’t offer these to you, be feisty – go ahead and ask!
When your infusion medication is ready, your nurse will hook it into your IV line and turn off the saline line. The medication infusion will likely be run via a machine that measures the speed of administration and the amount left. Depending on the medication you are receiving and/or how long it is going to take to administer, this might be all there is to it. However, some medications, like Remicade, require that your nurse adjust the speed that the drug is flowing every 15 minutes. He/she may also need to check your temperature and blood pressure a few times during treatment.
At the end of your infusion, the nurse will probably give you a little more saline to flush the last of your medication through the IV line. Your IV will then be removed and a small dressing and band-aid (plaster in the UK) applied. My clinic uses bright pink ones! Usually, you will only need to keep this on for a couple of hours. After that, it’s time to schedule your next appointment if you haven’t already. The nurse may do this in the infusion room or take you to the appropriate area of the center to do this. After that, you will be shown the way out and you should be all done! High five, warrior.
What To Expect After Your Infusion
Possible side effects and how to handle them:
As I mentioned earlier, dehydration is a risk with infusion therapy. If you were well hydrated before your infusion this shouldn’t be too much of a problem. However, make sure you continue to drink plenty of water for the rest of the day after your infusion, and the following day.
Fatigue is a common side effect experienced after infusions. It can range anywhere from being a little tired, to being so tired that you sleep for most of the following couple of days. If you can, schedule your first infusion so that you have nothing else to do for the rest of the day afterward, and can go home to sleep if you need it. After the first couple of infusions, you will have a better idea of how much fatigue you will experience and can plan accordingly.
Headaches during/after infusion therapy are usually due to dehydration. They can be treated with plenty of water, over the counter pain medication, and rest. I recommend consulting your doctor if your headache does not go away in a few hours or is extremely painful. Note: if you are getting infusions to treat IBD make sure you take Tylenol or paracetamol (if it is safe for you to do so) and NOT ibuprofen as ibuprofen can exacerbate IBD symptoms.
Body and joint aches
Achiness is also quite common after infusions, especially the loading doses when your body is adjusting to this new medication. So long as they are not too severe, they can be treated in much the same way as headaches – hydration, over the counter painkillers, and rest.
With any of these side effects, if the pain/fatigue is severe, does not get better in a day or so, or feels unusual in any way, I recommend seeking the opinion of a healthcare professional.
Be nice to your nurse(s) – you are going to be seeing a lot of them in the coming months and years!
Chronic illness is tough, but you are tougher – stay fabulous, warriors!