If you are new to a Crohn’s or Ulcerative Colitis diagnosis, or have tried the common first medications without success, you may be wondering what other treatment options are available. Biologics are an ever-growing group of medications, commonly given through IV or self-injection shots for many autoimmune diseases. For IBD in particular, Remicade, Stelara, Humira, and Entyvio are the most commonly prescribed. If you have been newly prescribed one of these medications you may be wondering what to expect and how to prepare for your first infusion.
While your specialist will talk to you about dosing and procedure, you may still be wondering how exactly it will work. For IV infusions, there are infusion centers. These dedicated buildings and facilities are exclusively for people receiving IV medications. More than likely, you will be assigned an infusion center based on your location. This will become the place you regularly receive your medicine, and will feel like a home away from home after you get to know the staff and vice versa. The length of the infusion will depend on which biologic you are prescribed, as well as dosing. Most infusions take anywhere from thirty minutes to two hours, although beginning doses may take a bit longer. As far as how often you will need infusions will depend on what your body needs, and may take a few tries to find the exact right amount of time for you. Most commonly doses are given every two, four, six, or eight weeks. Talk to your specialist to see what they recommend for you.
During and after infusions, it is common to feel extra tired and have some brain fog. I recommend taking the whole day off for the infusion, or finishing your work from home that day. It’s also a good idea to take the day after off as well to rest, which is about all I do the day after my infusions. Many people plan out their infusions for Friday so they can have the weekend to rest and recuperate. Whatever your schedule looks like, just be sure to give yourself some time to recover.
Routine blood work will also need to be done while taking biologics. These will measure and check various levels, and make sure your body isn’t forming too many antibodies against the medication. Most of the time your infusion center nurse will do your blood work for you right before your infusion. IBD patients also will often need B12 or iron shots routinely, and these can be administered before your infusion. Just be sure to talk to your doctor, so he can put in the order for the shots.
In addition to resting after your infusion, you will need to do some things to prepare before your infusion too. First and foremost, hydrate! Drinking lots of water helps you and the nurses. It will be easier to draw the blood, and to hook up your IV. If you’re not a fan of needles like I am, this is the most important thing you can do the day before and the day of! If you have hydrated and they are still having a hard time finding a vein, there are a few things you can ask for to help. Many infusion centers have a device called a ‘vein finder’. This little machine, a little bigger than a scanner thermometer, uses a special light to help see your veins more clearly. You can also ask for a heat pack. Applying heat to the area will help the vein expand, making it easier to access. If your infusion center happens to be in a hospital, and they just can’t seem to get a vein, you can request an IV specialist or someone from pediatrics to try. Nine out of ten times, they will be able to hook you up as they have more experience with smaller and harder to find veins. Also be sure to eat something nutritious before, and bring a snack. I’m almost always starving after my infusions! Lastly, bring a blanket! No matter what season it is, I always bring a blanket. Most medical buildings are kept pretty cold already, and all the fluid your receiving is cold too, easily bringing down your core temperature. If you forget one, don’t worry! Most infusion centers have blankets for patients to use.
I have been receiving infusions now for a little over a year, and looking back, I wish someone would have told me all these things! I trust that this gives some clarity to the experience itself, as well as all that goes with it. Being prescribed one of these medications may feel overwhelming. Just remember, you are not alone in this journey, and just because your body needs medication to function, it does not make your body less than. In fact, it makes you even more of a warrior. Keep fighting! Together we can concur living with IBD.
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