My Experience with Infusion Therapy

You’ve spoken with your doctor, read through all of the information, and decided to give one of the infusion medications a try. Now what? Like me, you may still have some questions and be uncertain about what to expect or how to prepare for infusion day. So today, I thought I’d share with you my experiences with infusions to perhaps give you an idea about what to expect and calm some of those nerves to make getting an infusion as comfortable as possible.

The first infusion therapy I tried was Remicade. I clearly remember the night before. I was up late as my mind swirled with questions and anxiety. Simple questions like, “What will the room be like?” got all mixed in with more difficult questions like, “What if this doesn’t even work?” To more questions, “How sick is this going to make me feel?” and “How can I best prepare?” Honestly, I was pretty terrified of the unknown.

Hopeful, yet scared

I woke up early (of course) and gathered up my courage as I tried to think of everything I could possibly need. I’m not going to lie, I was ridiculously nervous. I knew in my heart that everything was going to be okay, but my heart and my mind don’t always have the best communication skills. It is an odd feeling, to be hopeful yet scared at the same time.

At the infusion center

My doctor’s office has an infusion center. It is about a 12X14 sized room with several rows of reclining chairs set up in semi-circles around a television, and IV poles. Some people receive their infusions at the hospital or even in the comfort of your own home. But not me, I go straight to the doctor’s office. Two nurses greeted me, both very friendly, and got me settled in one of the chairs.

Hook me up, Buttercup

To my left, I found my pre-meds. Many doctors will prescribe pre-meds to take before your infusion to lessen some of the side effects or reactions to the medication. That first day, I took Benadryl and Tylenol. After some reactions, for later infusions I had to add IV steroids as well as IV Benadryl to my pre-meds. I settled in and tried to breathe deeply as my nurse searched for a vein.

Once my medicine was flowing, I became very grateful to have brought a nice, cozy blanket. I kicked off my shoes and curled up under my blanket as the medicine swirled through my body. To say I was cold would be the understatement of the century. I was FREEZING. I was very glad that I chose to wear cozy sweatpants and a loose top because I was going to be there a while.

Nearly 5 hours and an empty medicine bag later, it was finally over and time to head home. I felt quite tired and still very cold. I know some people don’t feel comfortable driving after an infusion, but I felt safe driving myself and made it home shortly afterward.

The following 24 hours

Driving home, I was very happy that I had taken the time to prepare for my infusion. I was so glad that I thought to bring a blanket, drink, snack, and a good book to read. Once home, my body was just done. I couldn’t take another step and barely made it up to bed. My covers were pulled tightly up as the medicine waged a war with my body.

I wasn’t hungry, but I wasn’t necessarily nauseous either. Around dinner time I was up again. I made do with some toast and tea. I just couldn’t shake the cold feeling though, no matter how many layers I piled on. Heating pads, electric blankets, nothing was working. I resorted to the hottest epsom salt bath I could tolerate and while it wasn’t totally better, it seemed to help the most.

Rest, rest, and more rest

The next morning, after plenty of sleep, I was starting to feel like myself again. Of course, I was still sore. My body felt very “heavy,” almost like I was carrying around a led blanket, but I was better than the day before, and I was happy with that. By dinnertime, my appetite was returning and with some more rest, I was getting back to myself.

It is easier when you know what to expect

I learned a great deal from my first infusion, things that I can do to make the process easier and more comfortable. I’ve since learned what to expect from my body and how to plan my activities. Most importantly, I learned to have patience. Medicine that involve infusion therapy don’t work overnight. It can take nearly 6 months to know if it is working, or to feel better. No matter how much I desperately wanted it to work right away that wasn't the case. I wanted to somehow magically feel better. Knowing that I was on the right path to slowing the progression should have been enough. But it wasn't. Here I am, nearly a year after my first infusion, still waiting, still learning, and still hoping for relief.