First Entyvio Infusion: Insights for Others Going Through the Same Experience

After a long wait and challenges with the Prior Authorization department, I finally had my first Entyvio infusion. While I reached out to others in the IBD community for advice, nothing could fully prepare me for what I experienced. As a new infusion patient, I want to share my journey and the valuable lessons I learned to help others who are preparing for this important step.

Before going into your infusion, it’s wise to do some research. Understanding Entyvio, its benefits, and possible side effects can greatly reduce anxiety. Some of the most common side effects include headaches, fatigue and nausea, but most people tolerate the medication well. I tend to take things to the extreme and go down the rabbit hole of what CAN happen, so don't make that mistake. In rare cases, the medication can cause anaphylactic shock, so I was a bit nervous about that possibility.

On the day of my infusion, I aimed to arrive 30 minutes early. Getting to the clinic on time can be a challenge—thanks, ADHD! But this time, I was proud to arrive five minutes before my appointment. Arriving early lets you fill out necessary paperwork regarding medications and allergies, ensuring a smooth start. The nurses asked me how I do with needles and if I get a bit woozy. They have had patients who do pass out, so they want to know ahead of time if you're more prone to feeling light headed. They provide you with a call light in the event you start experiencing any alarming symptoms.

Take a support buddy. Having someone by your side during your first infusion can make a significant difference. I brought my husband along, and his presence helped ease my anxiety. Plus, if you do have a reaction, they can expedite getting help. Research shows that having a support system can reduce stress levels significantly, making the entire experience more manageable.

When I get nervous, I talk A LOT. Ryan was able to calm me down and get me to take some deep breaths and relax. If it weren't for him, I wouldn't have known I was sitting in a recliner, and could put the foot rest up, ha! Next week, my mom is coming along. I like having family see the process, so they obtain a better understanding of everything we go through as IBD patients.

Know your veins people. After many blood draws, I've gotten familiar with my veins. Due to having very tiny veins in the lower region of my arms, I have had a few blown veins as well as some temporary nerve damage. I have a GIANT vein on the inner side of my left elbow, and it's always reliable. This knowledge helped the nurse find it easily, minimizing discomfort. I will add that the higher you go, you limit your mobility. I found it still possible to work on my MAC, and still remain comfortable.

You must consider potty priorities. This is a no brainer for those of us with IBD. In fact, if I haven't located a bathroom within a few minutes of arriving at ANY new place, I ask someone right away. It's out of habit, and having too many emergencies situations throughout my life, that yes, "potty priorities," are a real thing. Trust me, it's crucial to take a bathroom break before your infusion. I had an early appointment, so I had a lot of coffee, my smoothie and my electrolyte drink. I know better, but needless to say, I had to go to the bathroom about halfway through my infusion. I didn't really think that one through.

Make sure to dress comfortably when you have your infusions. Comfort during infusions can't be stressed enough. I recommend wearing loose-fitting clothing, like a tank top under a sweatshirt or sweater so you can easily pull one of your arms out. There are companies that make sweatshirts made specifically for the infusion experience. One of the most popular brands is called Be Well. The reviews speak for themselves. They have both adult and youth sizes available. Another company that offers port access clothing is called Care Wear. You can also find several options by doing a simple google or Etsy search. Infusion centers can be chilly, but they often provide warm blankets. My personal experience with hospital/clinic so-called "blankets" is pretty bleak. It's like covering up with a burlap sack. If you run cold (like I do) bing your own snuggly blanket. Most centers have small snacks available as well, but if you're picky like me, consider bringing your own munchies so you don't get hangry!

During the infusion itself, I felt a mix of excitement and anxiety. Excited because I was finally starting treatment after a long, 33 day wait, but anxious about the new drug about to enter my system. The nurses I had were welcoming and kept me informed, but if you don't happen to click with your nurse/s, it's completely ok and your right to request a new one. This is your experience, your journey and it should go your way. The IV insertion was quick and relatively painless due to my understanding of my veins. The infusion itself took about 30 minutes, but depending on the dosage, it can take longer. Make sure to bring a book, music and/or computers to help pass the time.

After my infusion, I felt a deep sense of relief. Completing this step was a significant moment in my treatment journey. I did feel incredibly fatigued the rest of the day, so it's important to listen to your body and rest when able. As always, call immediately if you experience any odd symptoms. The infusion center will send you home with a packet of important documents, and one item will contain a list of things to watch out for.

Infusion therapy is vital in managing conditions like IBD. Although my first infusion felt a little daunting, I left feeling hopeful and empowered. Embrace this journey; be patient as your body adjusts. Everyone’s experience is different, and that's okay. By sharing my experience, I hope you feel a little less alone as you approach your first infusion. You are part of a supportive community that shares insights, experiences, and encouragement. Sending positive and healing energy your way for your first infusion.